Mood:  down

Hello,

So much for a few relaxing days off due to a holiday...at 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 questions...no 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,
~Lisa

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. No...as 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,
~Lisa

Mood:  a-ok
Happy Halloween (almost!)...

I almost wrote an update on Tuesday or Wednesday....but it would have been full of negativity, questions, reality vs perception, unfairness vs "what is fair" etc etc. Needless to say, I was not in a good place. I'm doing a lot better now.

None of my questioning had to do with Morgan's current physical state - for she is doing pretty well. Her counts crashed on Thursday....we went to DH on Friday for a platelet transfusion...and now Morgan is on her bed, watching a movie with a friend. I hope I don't jinx it, but I believe that she has avoided a neutropenic fever. Avoiding this type of fever keeps her out of the hospital....yeeha!!!! For whatever reason, she has weathered this round of chemo MUCH better than the first round. Her counts didn't fall as quickly or as deeply as her Dr. expected. In fact, they seem to be rebounding pretty well. She actually went to school for most of the week, sleeping in really late just one day.

Her port is in, but she decided to do blood draws via her arm. To her, this was a great decision on Monday and a horrible decision on Thursday (she got poked 2x before they found a viable vein). This coming Monday, we are back to the visiting nurse coming and doing a blood draw through the port. It is funny, in a way, how kids learn through experience. Yet, I never would have imagined this type of learning experience happening to anyone I knew...let alone my own child.

Part of my dilemma earlier this week was a perspective issue. You know, they say that perspective is 9/10's of the law. Anyway, I was questioning the process of life....are you "living" each day or is a person one day closer to dying. After sitting with this for quite a while, a friend asked if Morgan was dying or if she was indeed living the day for what it is....it may not be the typical day that the typical person experiences...but is she living each day? I would have to answer with an unequivocal YES! She has her periods of "why me", but it doesn't seem to hold her back from experiencing life for what it is. My perspective then changed and my blues went away. Morgan is indeed tackling each day with "vin and vigor"....to the best of her abilities. She gets philosophical about life and the role her cancer has in it, but it doesn't slow her down in experiencing the moment, the "NOW". I am deeply saddened that she is dealing with what she is dealing with, but she is truly trying to make the best of it. What a life lesson she is teaching me - all of us - in the midst of such adversity!!

Sooo, on that note, I'll wrap up this update. Thanks to everyone, for being there for us...with the prayers, the help and support. I cannot imagine going through all this without you!!

Good night and God Bless,
~Lisa

Mood:  cool

Hi,

We are home, we are home, we are home.

What a week! I can say though, that as of right now, that she has successfully completed another round of chemo (without getting sick) and does indeed have her medi-port in. Yeah! Her counts are going up and down with no solid reasoning behind it, so I'm glad that she got the port in. Due to her platelets being at the minimal level for the port procedure, she has quite a bruise around the insertion site (on the left side of her chest). Outside of that, tiredness and soreness, she is doing pretty well.

Tomorrow, we start the injection series to bring her white count back and pray that she doesn't spike a fever when her white count is very low. This will buy her another admission ticket into the hospital. In the meantime, I am hoping for some sleep and "normal activities". Her Dr. is fully expecting to see us back sometime next week for a transfusion (or two).

Thanks to EVERYONE for their help these past couple of weeks....for wonderful dinners, quilts, offers to clean, cards etc. You all have been marvelous. I feel a tad guilty about all this effort and energy, partly because we have no clue what even tomorrow will bring - let alone the distant future. Despite the guilt, I truly do appreciate it for it has indeed made life a bit easier!!

That is about it, for now. I am also eternally grateful for the prayers and positive energies that keep us plugging along!!

Good night and God Bless,
~Lisa

Mood:  incredulous
Hi all,

What a couple of crazy days!! We did go up to DH on Friday, but not for the reason we thought. Due to some sort of "whoops"....the port placement didn't happen - but Morgan did need a red cell transfusion, so that is what she got.

While the delay was a bit taxing on Morgan's emotional state, it may be for the best. Her counts are looking better. In fact, her platelet count is higher than it was before the first round of chemo. This is telling as far as indicating that the chemo seems to be working and giving her marrow room for good cells!! The plan is to get her port in on Tuesday or Wednesday (and get her picc line out). Yes, the second round of chemo is also planned for Tuesday through Thursday.....but the port placement shouldn't be a problem during the chemo process. In fact, it might be easier for the port can be accessed for the remaining chemo and she won't have to be poked in a sore spot.

After Ryan's soccer game on Saturday, Morgan had some pretty severe headaches and nausea. Poor kid, if it isn't one thing, it is another. I must say though, the intensity of it all had me pretty scared. We ended up going to the pediatrician's office around 9:30 PM, had a quick neurological test and X-ray. Nothing conclusive was found so I am going to have her lay low for the day and keep a sharp eye on her. Looking at her right now, though, she looks great! Hopefully, this will continue. Her spirit is soooooo strong that it over-rides her aches and pains more times than not. While having a strong spirit and disposition is a good thing, it is tough to keep her mellow when you want to!

Well, that is what's happening for now. I'm praying that we do not have a headache repeat like yesterday's....but we are prepared to move further if they do arise.

Thanks for the positive energies and prayers...
Take care and God Bless,
~Lisa

Mood:  sad
Hi,

I realize that it has been awhile since my last update but a lot has happened, yet it hasn't, so I hesitate to write right now (makes a lot of sense, eh?!!?).

We had a decent weekend....we had no family visitors so it was low key. As it turned out, Morgan got a fever/cough on Sunday so we wouldn't have been any good anyway. She seems to be mostly over it now. We did get to the quilt show and Ryan's quilt was AWESOME...it brought a huge smile to Ryan's face. How can I ever thank you Janet?? I told him yesterday that if I knew a new quilt would cause him to make his bed everyday...I would have gotten it done a long time ago!

As far as a lot happening....her hair is finally falling out. Aaargh! I would say that she has lost about half of it. She has her wig, but I'm not quite sure if she really wants to wear it or not. On a positive note, she seems to be TOTALLY comfortable at school with the hair loss (until tonight when she saw a boy she knew at the school's open house...then she hid! :) ). Anyway, it says a lot for the staff there and the kids. THANK YOU for making Morgan feel so comfortable that she feels that she can expose her vulnerable side.

Her blood counts are not moving much and this is a bit distressing to me, but DH says it is OK. The counts were on the rise, but then some fell and some plateau 'ed out. This is where the "not much has happened" is. Tomorrow evening (after more blood work), I'll have a much better handle on whether or not she'll get her port put in on Friday or even if she'll get her next round of chemo on the 17th. Her platelets need to be a bit higher for either to occur.

Sooo, I'll update more tomorrow night or this weekend.

Thanks so much to Donna and her crew of wonderful dinner providers. They have been great!!

Good night and God Bless,
~Lisa

P.S. Morgan is with me as I type this and she wants to say, "Hi. Love, Morgan"

Mood:  chillin'
Hello,

Fall is certainly here...the leaves are gorgeous. The cool weather this weekend was great for soccer games and for just chillin'. While Ryan and I participated in soccer.....Morgan did a lot of the chillin' out part. Because she still has the picc line in her arm, she is restricted in her choice of activities. While this is a bummer in some ways, it gives her a great excuse to veg out, watch a little more TV than normal, visit with her grandmother and let her body try to get back up to snuff after the chemo and radiation treatments.

In walking this path of treatment, time spent with the other child is quite a trick. Ryan has been doing really pretty well....considering. He likes school and seems to be doing well. He is also on the cross country running team and manages to finish in the top 6 most of the time. Part of the "Ryan and I" time is with soccer. I am the assistant coach for his travel soccer team and it is great hanging out with him in this manor. Thanks to the foresight and planning of some friends, they often arrange their plans to take care of Morgan while I spend time with Ryan. This past game, a friend offered to watch Morgan...they baked, watched a movie, did nails, etc., while Karl and his mom came to watch our game. Thank you, thank you, thank you!! This tactic is wonderful in-as-far-as Morgan thinks she got the better end of the stick (which she probably did) without realizing that what we are doing is trying to slow her down a bit so her body can mend itself. Ryan, in turn, got everyone to see his game.

Medically, her body is still trying to re-cooperate from the radiation and chemo. She is actually doing pretty well. Her red and white cell counts are coming back. The platelets are really slow in their re-bound. Her throat and chest pains have seemed to subside also. She has actually been going to school all week. The VNA is coming in to do blood work on Mondays and Thursdays until all of her counts are back up. She is still a bit tired, but seems to have a little more energy with each passing day. Now, if we could only get the night time fears to subside...we'd really be good to go!

What comes next? I heard today that she is TENATIVELY scheduled to get her medi-port in on Friday, October 13th. It is a good thing that I am not superstitious and consider 13 somewhat of a lucky number! Then, she'll have another 3 day round of chemo, starting on the 17th. While I would like the time between the two to be more spread out....I think the happiness of getting the picc line out will override the tenderness of having the port in and having it accessed so quickly. We are also penciled in to go down to Dana Farber in Boston around the middle of November. We are going to discuss Morgan's participation in a phase 1 treatment protocol. Yikes! I'll have more information at a later date.

Well, Ryan is off for a hiking trip in the White Mtns. this weekend and I think my sister Terri may come to visit. I hope you all have a great weekend and will post another update next week.

Oh....another kindness has come our way via our neighbor and friend, Janet. I am a beginner quilter and she is much more than that. During the past several years of treatment, she knew that I had material for Ryan's quilt (I already made one for Morgan) but didn't have the time or energy. She took the material and assembled it. I am told it will be shown at the Monadnock Quilters' Guild Quilt Show this weekend at SMS. Sooo, if your looking for something to do....stop on by, I heard she did a great job :) We'll see it tonight - I cannot wait!

Thanks everyone for all you have done!!
Take care and God Bless,
~Lisa

Mood:  lyrical
Hi all,

Believe it or not we are HOME!! What a wonderful thing!! I felt as light as a feather when we left and hit the breezy, fall air! I could dance!

Morgan got a platelet and red cell transfusion today and off we went. We got home around 6:30 pm. It is incredible the difference a bag of red blood cells make....she had color (besides green) and energy. We came home with two different prescriptions for antibiotics and off she goes! She really wants to go to school tomorrow. Hopefully, nothing else pops up.

In general, she is feeling really good. We are dealing with an unexpected pain in her chest...but the Drs. believe that it is radiation and back-tumor related. With the shrinking of the tumor and the shrinking (we hope) of the cancer in her bones...her body needs to adjust and that will cause pain in itself. We are following it to see if there is any rhyme or reason to what triggers it.

Otherwise, like I said before, she is feeling energized - which is an absolutely wonderful blessing to see. Her Dr. is going to plan Morgan's next step this weekend.

For now, I am soooo very thankful that everything has seemed to work out (for now). The definition of "now"?? I have no clue. But I will gratefully receive any and all time Science and God had given to us.

Thanks everyone for the prayers, energies and kindnesses you have sent our way. I'm not sure I can adequately explain my appreciation...for what we have received is unmeasurable.

Good night and God Bless,
~Lisa

Mood:  d'oh

Hi,

Right now, I am typing this quick update from our new pad for the next couple of days. Morgan was admitted to DHMC-CHaD this afternoon for a neutropenic fever (low white cell count accompanied by a decent fever). I was sort of expecting this, but wish we could have delayed the hospitalization a bit more.

Her blood counts have taken quite the nose dive. Friday (after three days of chemo and eight days of radiation), she received a platelet transfusion with another one yesterday. She also got some red cells yesterday. I guess her body's marrow didn't have quite as many good cells as we were hoping for so her counts crashed pretty quickly. It truly was our goal to keep her out of the hospital. But our plans were cut a bit short. Morgan is bumming but not terribly upset about it all. Me? I think I am still running off of the adrenaline of it all. Her last, inpatient hospitalization was March 18, 2005. Some things feel like it was only yesterday....other things (such as the fever limits) seem to be stored in another part of my brain that isn't easily accessible. It is a wierd thing to explain....

That is the scoop for now. God willing, we'll be out of here in 2 days. If her fever persists though, we may have to hang out here until her counts come back up. Time will tell, I guess. I do have my lap top so if you would like to send an email or call...I'm sure Morgan would loved to hear from you!!

Well, Good night and God Bless,
~Lisa

Mood:  special
Good afternoon,

This is a perfect day for sleeping (with the rain and all) but Ryan and I are off to a soccer game soon. Morgan, however, is taking full advantage of the day and is indeed sleeping -after a pampering manicure and pedicure that happened late this morning. Yeeha!!

The week had many ups and downs, but there were more positives than negatives. All in all, she had a good week, with the exception of Friday. As it turned out, Morgan and I ended up spending the whole week at David's House. She got her picc line in on Monday. She was wide awake with no pain meds - awesome! Then, off to radiation. At this point, she could get her radiation treatment WITHOUT morphine because the radiation had shrunk the tumor enough to relieve the pain and pressure. Thank God for this!!

The picc line enabled Morgan to get her three chemo treatments in. This began on Tuesday. I tell ya', she is quite the trooper....she made the best of each day playing, coloring, watching movies etc. We also had a few visitors during our stay. Donna brought up Izzy B. (Morgan's pup) to visit on Wednesday evening and my sister, River, came with her family on Thursday and the girls' got a chance to play before we all went out to dinner. Friday, Karl, Ryan and Pam came up to support Morgan through the OR procedure of getting the port in. The visits were wonderful for both of us :) .

Friday, her medi-port was supposed to be put in, but her platelet count was way too low and the procedure was called off at the very last minute (plus, she wasn't feeling good at all). Instead, she received a platelet transfusion with us looking at rescheduling the port at a later date. Like I mentioned before, Friday was her down day so this news was received with mixed feelings. She was terrified about getting the port put in yet she wanted the picc line out. Oh well...I much rather be safe than sorry. I'm glad Pam was there because she could explain to Morgan (from a third party, friend/nursing perspective) that this postponement was a great decision.

Now, we are back to our daily injections to keep her blood counts up. Monday and Tuesday bring our last two radiation treatments. We'll stay overnight, Monday night, at David's House. Then, I hope, we can get back to a "normal life" schedule (for the next 3 to 4 weeks anyway).

Thanks so much to EVERYONE who ended up making our week a bit easier....for the food that was brought in, the visits, the cards, the prayers and positive thoughts - everything....it made the week flow a bit smoother.

Well, I have to go get ready for another soccer game in the rain. Thanks for checking in and the positive energy being sent our way! I truly do appreciate it all!

Take care and God Bless,
~Lisa