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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 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 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,

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,

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

Mood:  blue

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,

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) 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" 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,

Posted by super2/missmorgan at 10:05 PM EST
Updated: Sunday, 3 December 2006 9:34 PM EST
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Tuesday, 21 November 2006

Mood:  flirty

Happy early Thanksgiving everyone.

I know I say this a lot, but it really is truly amazing how quickly things, life, demeanor etc can change. I am surprised every time Morgan's health takes another quick twist or turn (considering how many times this is happened, I really shouldn't be by now). This time though, it is for the better. Even though she has incredibly low white cell and platelet count right now, Morgan looks GREAT! This past Friday and Saturday (and the week prior to) she was feeling horrid and didn't look much better. Now, she has the energy, her sense of humor and is feeling OK. She has even gone to school these past two days.

The only visible reminder of last weeks' health issues is her weight loss. She now weighs in at a measly 49 pounds. We are working on fixing that, but it is a slow process because her eating is not where it should be. Part of the problem is that her tongue is still hooking to the left....she says that it feels weird to eat. One only notices it when she is tired, her pronunciation of words gets a little garbled. Do we know the reason for this yet? No.

I can really do without this roller least we seem to be on the upside! We now wait and see how low her counts go and hope she doesn't get a fever during this low period.

That is about it for now. I hope you all have a relaxing, fulfilling Thanksgiving! I'll try to post some new pictures next week.

Also: Happy, Happy Birthday to our friend Caroline, in Ohio, on her 7th Birthday tomorrow!! We are sending you all kinds of crazy and carefree vibes to add to you day of celebration!

Take care and God Bless,

Posted by super2/missmorgan at 5:02 PM EST
Updated: Tuesday, 21 November 2006 5:07 PM EST
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Thursday, 16 November 2006

Mood:  chillin'

We are now home!!

What a week. Morgan looked and felt much better today. We haven't resolved all the issues (like the tongue and belly stuff), but she's doing a lot better. We came home with some antibiotics to address the belly stuff. I am now hoping that she can get through her blood count drops without a fever :)

This will probably be my shortest update. I think we are all wiped out. The break I had was wonderful - it made a huge difference in my overall coping of everything, (and, despite what Morgan would say right now, it was good for her too) but I think I'll go to bed when Morgan does -- which is soon!!

Have a great is supposed to be sunny sometime soon...right??!!??

Good night and God Bless,

Posted by super2/missmorgan at 7:30 PM EST
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Tuesday, 14 November 2006

Mood:  chatty

Hi there,

It looks like things are turning around, in a good direction, for everyone. Ryan and I got some time to hang out together, I got some much needed sleep and it looks like Morgan is doing a lot better. Karl, however, is probably tired.

Things are not 100% figured out, but it looks like they are going to go ahead with her first scheduled day of chemo and see what the rest of the days bring (she gets 3 days worth). According to Karl, many more Drs. looked at the MRI and they have discovered nothing. YEEHA!!!! This is leading folks to believe that her symptoms may have really been driven by a virus of some sort. With the clean MRI, it also leads the Dr. to believe that the current cocktail of chemotherapy is they are going to proceed. The tongue?? It is better, but not totally back to normal.

Now, she still has fevers and is achy, but the fevers are not as high. She is going to be discharged to David's House today. To give you an indicator on how much better she feels, she told Dr. Chaffee that she didn't want to be discharged until after BINGO came on. The hospital runs an interactive TV BINGO for inpatients every Tuesday, in the afternoon - and being treated in the clinic won't work because you can't play BINGO there. I do not know what their resolution will be :).

So, we'll see how the rest of the week progresses. I am holding my breath that she doesn't back slide again. But if she does, she'll be minutes away from the hospital.

I'm planning on switching places with Karl on Wednesday AM.

That's it for now....pray-fully, she has avoided something major. Thanks for all your prayers and concerns.
God Bless,

Posted by super2/missmorgan at 10:46 AM EST
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Sunday, 12 November 2006

Mood:  blue

You know....just when I think things were looking better...BAM!

This AM I would have wagered a fair amount that Morgan would be home tonight. She was looking pretty good, ate 1/2 a bagel and had no fever for 8+ hours. By mid morning she had spiked another fever, felt terrible and her blood counts crashed. Needless to say, she is still up at DH....but with Dad (I am now home with Ryan). When I left this afternoon, she was getting a red cell transfusion despite a 102.9 degree temp.. Morgan, in her typical Morgan fashion, is presenting whatever is flipping her system out in an atypical presentation of symptoms. There are still many, many questions with few answers.

Many specialists have looked at the MRI of her head and back, but have seen nothing new. While this is absolutely TERRIFIC news, it is confusing as far as trying to problem solve her symptoms. If there was no fever, things would be easier to figure out. I believe that the Dr. is feeling that a lot of her complaints are due to a virus ( maybe a gastrointestinal bug??). With her bone marrow being so compromised may be causing problems with the blood counts as well as exacerbating her back and leg pains in the fight against "the bug". But this is a theory. It doesn't at all explain why she has lost some muscle integrity on one side of her tongue and it raises the question of the effectiveness of the current chemo regiment. Up to today, we really thought the chemo was doing the trick......

Neuroblastoma? Virus? Neuroblastoma? Bug? Who knows? Not me.

On a positive note, her pain is somewhat controlled and they will introduce a new pain med tomorrow that might work even better without the "itchies". As far as scans, we'll see. Everything seems to keep changing. She was supposed to start another round of chemo on Tuesday. Again, this is questionable because we need to figure out what is going on first.

Soooo, that is it for now. it is scary and un-nerving not knowing what is going on, but she is in good hands. Hopefully the answer(s) is around the corner. I'll write more later when we know more. It is now time to catch up on sleep (maybe).

Thanks for the positive energies everyone!!
Take care and God Bless,

Posted by super2/missmorgan at 8:53 PM EST
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Saturday, 11 November 2006

Mood:  down


So much for a few relaxing days off due to a least it is beautiful out there for those who can enjoy it. Ryan is enjoying it immensely with friends.

Morgan, on the other hand, is stuck inside here at DHMC. This admission to DH was far from planned...and it happened pretty suddenly. The back pain that I mentioned in the last update, along with a painful belly, head, arm and legs...accompanied by a "swollen tongue" and fever...landed her here in room 536.

She had a MRI yesterday evening of her brain and back, but nothing is showing up. Before the MRI, she had a radiation face mask made incase the MRI showed something that would have to be addressed/radiated this weekend. With nothing showing up, we are still in limbo.

So, we'll be hanging out here to try to figure out what is going on. She is full of pain meds as well as itchy meds (pain meds make her itchy) so she can be comfortable. We are looking at possible Xrays of her arm and skull as well as a CT scan today. We also need to figure out the chemo situation - is the current chemo regiment working or do we go to step 2?. Tons of real answers.

God willing, we'll know soon what is going on so we can address it!!

I'll update more later when I get more info.

Thanks for the prayers and God Bless,

Posted by super2/missmorgan at 11:37 AM EST
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Wednesday, 8 November 2006

Mood:  not sure

Good evening,

Karl and I went down to Dana Farber for a consultation today. While I knew we needed to do this....I needed a little Xanax (anxiety med) help. I was really nervous about what Dr. Diller would say. I came out of the meeting totally relieved, excited about having sketch of plan to follow and with a new perspective on recurrent neuroblastoma. of now...there still is no cure BUT there are ways of handling it like a chronic disease. A chronic disease that could exist for quite a few years.

My objectives in treating Morgan is many fold...I would like the least invasive, most productive treatment that would contribute more to the quality of life versus the quantity of it. What I am learning is that there really is no right or wrong (since there is no solid cure) but we really need to be careful that we don't put the "cart before the horse". We also learned that the protocols that are the most invasive don't necessarily lead to more quantity.

With that said, Dr. Diller believes what we are doing right now seems to be the best approach for our criteria and Morgan's physical state. Morgan is responding to the chemo at DH with few side effects. Yes....her hair is falling out and her belly is more sensitive....but she isn't vomiting, can still go to school and seems to have reduced pain. There will be a point where we are going to have to move onto another treatment. At some point, the neuroblastoma will figure out a way to ignore the effects of the medicinal "cocktail" she is on. It is at this point that we'll have to look at other options. It may happen sooner than later because she has had some substantial back pain the past day or two, but that may be due to weather. We'll see. At least now, I have that "sketch of a plan" so I'll have some sort of direction when that day comes.

I think we are going to try to keep treatments in Dartmouth as long as we can. Of course, from a scientific view, Dana Farber would like to see Morgan on a protocol down there so they can further chart the effectiveness of experimental neuroblastoma treatments. Dr. Diller seems to understand and respect our position and the fact that Dana Farber makes Morgan REALLY nervous and agitated. Given these factors, she is willing to work with Morgan's Dr. at DH to make treatments as traumatic free as possible for Morgan. We also learned that the treatment in PA wasn't as severe as we thought but now is not the time, for Morgan, to participate in it.

Sooooo, all in all, a good day. Who knows what tomorrow will bring - but for now, my heart and head seem to be in agreement. Karl, also, is in agreement. This is an amazing accomplishment in itself!!

The next step?? In talking tonight with Dr. Chaffee at DH, Morgan is scheduled for her next round of chemo next week...Tuesday, Wednesday, and Thursday. Because of the back pain, her Dr. is going to try to schedule a scan or two to see if something is still growing and causing pain despite the chemo. After today, I'll feel much more confident in our current direction. It is such a blessing having some sort of game plan.

Well, good night. We feel (especially today) the power of everyone's prayers and positive energies in carrying us on this journey.
Thank you and God Bless,

Posted by super2/missmorgan at 9:28 PM EST
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