Thursday, July 15, 2010

Bailing out, digging deep, shaping up, battling on, pushing through and getting it together

G'day out there in Stacy land.

I hope all is well with you at the moment.

This week we are in Reno, Nevada. Not surprised are you, well I guess we aren't either. As I write we are at the end of our 7th week here in Reno attending the Sierra Integrative Medical Center. We will complete this week of treatment and then decide how much of next week we will spend down here. Yesterday we thought it would only be a couple of days of next week however after today we may be looking at the whole week. The situation in regards to duration of treatment has been in flux for the last month or so.

Today was a rough day, however that isn't totally representative of our time here. Whilst the overall experience has been tough most of the days themselves haven't been overly challenging.

Stacy's physical condition:
Her blood seems to be much healthier, less immune hyperactivity, less dehydration and oxidative damage (related to chemicals in her body) to her red blood cells. Better liver function, however there is more improvement needed with this. Her allergic reactions seem to be much less active as well. Her recent vital capacity (lung function) test seemed to show that she is stable in this area - we will take stable, stable is just fine at the moment.

Her speech and total body motor control seem to be continuing to progress in line with the last 18 months. It is hard for us to assess this really well, however we feel like most movement tasks are harder now than they were when we left home in May.

Stacy's mental and emotional condition:
I'm just a young man with a less than extensive experience in the world. Stacy is by far the bravest and toughest nut that I have met. She finds herself in an intensely painful and scary situation and yet she is constantly trying to protect the rest of us around her from the pain and fear. She fights much of the mental and emotional battle by herself. Stacy has never been shy to ask for help and is keen to share the load of the experience however she is constantly aware of protecting others as well.

On Monday she encouraged me to buy a piece of pizza for a homeless man who she has seen wondering the streets of Reno. I was quite resistant to the idea though shyness or fear or something. I did however end up getting the pizza slice and drove over, found the man and gave him the dinner. He was very happy and appreciative. It really was a divine moment. Impossible to recapture through description, it was intensely emotional for both of us.

Stacy is still a wonderful person despite the arduous nature of your life at the moment.

The challenge is harder now than it ever has been. We will continue to face it every day. We are hopeful for the next few months.

Stacy loves you all and hopes you are all making the most of your days. Send her some love in the comments here or on facebook or however you normally keep in touch.

Lots of love

Mike

Sunday, June 27, 2010

Mind Meld~

If I were french fries you would be ketchup.
If I were a meat pie you would be my crust.
You're the flip to my flop,  the ying to my yang.

You are my favorite part.

Some people look a lifetime for what we have.  I love you more today then yesterday.

Friday, June 25, 2010

WTF - What The Fong.

That's What The 'Dr.' Fong for all of you who aren't in Reno with us.

This afternoon Debi was on a roll talking about when Stacy's cure from MND sets the neurological world on fire and she goes on to write a book about her experiences and then this book gets picked up by Hollywood and made into a feature film. Just quietly I think Debi liked Julia Roberts as a candidate to play her.

Stacy and I carried this on and were talking about who would play all the parts in the movie of her fight with Motor Neuron Disease - Gambling in Reno, a high stakes medical adventure. The highlight of this is when we decided that the guy who plays the Asian gang boss type guy in 'The Hangover' would be best suited to play the head doctor here at the Medical Centre, Dr. Bruce Fong DO, HMD. WTF

What the Fong?!

I'm proud of us for still having a great time and laughing about something everyday. We have had some hard days over the last year and a half, this week included however I don't think there has been a full day in which Stacy and I haven't been able to laugh together. Plenty of half days like that but maybe not any full days. We are blessed by that.

Righto so here is what is going on. Stacy's blood test for Lyme disease came back last week and it was positive. This means that there is a bacteria infecting Stacy's cells that is very hard to kill and causes lots of problems. Many people at this clinic have Lyme disease. This clinic seems to have worked out a way to kill Lyme disease, we think they will do that for Stacy. This could be extremely good.

Other things that have been identified are that she has some heavy metals in her body and a range of food and environmental allergies. The clinic also has a long history of successfully dealing with these issues.

Her treatment at the moment continues to involve daily detox IVs at the clinic, plenty of oral supplements, a battery of subcutaneous and inter-muscular medicine injections delivered both at the clinic and by Dr. Neild at home. She is also continuing with 'the push' which is the nightly injection of medicine that induces some kind of major immune system reaction characterised by shivers and shakes, muscle tightness and intense ache and a fever. She also intermittently during the week does some massage, some lymphatic drainage therapy and some liver cleanse theory.

There is a new therapy on the horizon which they call neural therapy. This involves a series of acupuncture style (along meridian lines) injections of medicine into her lower back and legs. This is designed to open up the energy pathways for her legs and improve the ability of her nerves to synapse. It will involved around 100 subcutaneous injections during the session.

The treatment continues to be hard work physically, emotionally and mentally. I've been working harder this week at being excited about the therapy rather than being skeptical of the therapy, its been good.


The theory that we are working with is that by dealing with all the imbalances that are present in Stacy's body - dissfuctional liver, hyperactive allergic reactions, confused immune system, heavy metals and Lyme disease - she will be in a good state of general health. Once all these blocks to healthy function are removed then her body will be given its best chance to holt or reverse the degeneration that she has experienced over the last 16 months.

Currently we haven't seen any signs of that reverse yet. We do believe that this clinic will be able to successfully deal with everything they have found. The Fonger hopes to see some clinical (functional) change before we leave in the next couple of weeks. We think that we are in the right place for this to happen.

Tawnya has gone home to Great Falls. Shannon one of Stacy's college room mates, bridesmaids and general sister from another mister has come and gone. The presence of these intimate friends has been excellent. Thanks girls, nice work.

Sorry that you have to put up with me writing instead of Stacy. She is still firing along with wonderful moments of Stacyness (caring for and encouraging the other patients at the clinic, achieving and verbalising moments of uplifting perspective, humorously negotiating and disarming the potentially embarrassing, uncomfortable and disheartening aspects of her daily life and making the people around her feel as though they are uniquely special and worthwhile) she just doesn't have the emotional energy available to write them up on this blog.

Lots of love to you all. Keep it coming right back over.

Mike and Stacy

Monday, June 14, 2010

Time for an update

G'day folks.

Its Sunday evening after 2 and a half weeks here in Reno. It has been a pretty nice weekend. Unlike last Saturday this week Stacy woke up feeling pretty good and refreshed. We have had a couple of nice relaxing days enjoying the excellent weather, eating out and resting up. Stacy has punched a 2 top quality afternoon naps, we think they are pretty important for her to catch up on the week of treatment action.

At noon today the T Ray, Junior Klein, the sweetest young lady ever to come out of Great Falls high Tawnya Gilchrist arrived in town. Tawnya is Stacy's great mate from back in the school days as is going to stay with us for a week and help ease the experience for us all.


We are excited to have Tawnya in town for the next week.

Last week was a tiring week. We ramped up the treatment intensity which was hard on Stacy's body due to the induced fever reaction that she experienced nightly. We are still waiting for some test results to come back however we are getting into the rhythm of the treatment and expect a similar week this week. We still feel like there is value in the treatment and are hopeful that after we have survived our time here that Stacy's body will be able to do some healing on its own free from toxins, pathogens and whatever else is disrupting her cells.

Thanks for all the love and care that has been sent our way.

Best wishes, Stacy and Mike

 "Now get out there and make a difference"

Saturday, June 5, 2010

Treatment - Day 7

G'day friends, family, fans and followers.

It is Friday evening, the end of a week and the end of our 7th day of treatment at the SIMC in Reno. Overall we are going good, we've got one brave girl on our hands here people.

The first few days of our treatment focused on detoxification of Stacy's body, with extra attention on her liver. It was also a time of testing - blood, excretions and lung function.
Some results from this time are:
-Stacy's Liver is not able to keep up with its filtering job, so her red blood cells and her plasma have accumulated various imperfections.
-She has some small tube like bacteria in her blood called spirochetes. These are linked to a range of diseases - fire up google if you are keen.
-Her immune system is not functioning effectively. In some aspects it is not reacting to destroy antigens as it should, and in other situation it is hyper sensitive to some antigens and is over reacting and wearing itself out creating a response.

-There are still tests out for parasites, viruses and diseases.
-Her vital capacity (functional lung volume) is at the same level as it was a month ago.

The second phase of the treatment started yesterday and it is full on. At the end of each day of getting IV treatments, pro neural system and anti virus injections Stacy is given an injection of something that is designed to reset her immune system. It generates an intense fever that so far (2 nights) has only spiked as high as 102 degrees F, however we are only at Level 1 of 10.

It is a pretty rough ride. It takes about 45mins from the time of injection to start and then it starts quick. So far it has been characterised by 45mins of extreme cold feelings coupled with body stiffness and shakes that rattle her teeth. Then it fires up a fever for about 2 hours that leaves her exhausted and sore. In the morning she is very stiff and moving is harder and more painful than usual. It is called the Push and most of the patients here get it. Stacy will have it everyday while she is here. At this stage we expect she will have 25 pushes over the next 4 and a half weeks.

Now Stacy has never delivered a child however I get the sense it might sound something like the moans, groans and snapped instructions that we have heard over the last couple of evenings.


The Push coupled with a range of detoxification techniques are designed to kill bacteria and infections, and reset her immune system so that it can find and recognise the cause of her MND symptoms and correct the problem.


That is the plan at the moment and time will tell how effective it is for Stacy. Similar plans seem to be very effective for other people here.


Other stuff:

Check out this excellent effort regarding the Great Falls fund raiser over at Cindy's blog. http://cindycieluch.com/blog/?p=4891
Love your work Cindy, well done.

Some of Stacy's close mates are coming down one at a time to do some nursing. This is good, we've worked out that we can use one extra set of hands when it is one of Stacy's intimates who can get in on all the gritty aspects of our current situation. We are looking forward to visits from these girls.


As I said overall we are going good. We feel like we are doing something, and that something will be good for Stacy's body. Thanks for all the love.

Mike and Stacy

Thursday, May 27, 2010

Speedy update.

Hello friends and family. Mike on the computer for an update.

Its a bit late at night for cheekiness and there are many topics to cover so I apologise in advance for the lack of creative prose. The plan is to dedicate full posts to the following, however in the interim here is what has been going on.

Great Falls was pretty good. It was a higher intensity week then we are used to back in Brisbane due to the large number of people that we wanted to spend time with during the week. Consequently it was both very enjoyable and quite tiring. I think by the time we left for Nevada we were more tired than when we arrived after our 26 hour trip from Australia.

Thanks very much for all the folks who traveled to come and see us. We enjoyed all the meals, rides, chats, babies and quiet times on the couch.

The fundraiser held on the 21st of May was a major event. I'm hesitant to define it by the number of people who came, amount of donated items, hours of preparation and funds raised as these amounts don't add up to the positive feeling and love that Stacy and I experienced from the event. It was a great success and we are very thankful to everyone who contributed.

Yesterday we flew down to Reno from Great Falls via Seattle. It was a pretty good trip, I think the last big trip was still in our memory so this little one didn't seem too bad. We have our rental car, we are in our hotel suite (both are good) and we are beginning to get our bearings in Reno. We arrived in at the hotel around 10:30pm and were up at 6am to make our first appointment at the clinic.

Today we spent our day at the Sierra Integrated Medical Center. Our description of the day would have been fairly different depending on when you asked us. It feels a little unfair and inaccurate to report my feelings about the day and the clinic now as during the day I felt both more positive and more negative at different times about the whole thing. You can consider that as you read the following.

I don't think we know much more about the big picture of our situation now than we did 24 hours ago. We have more information about some of the details however in terms of knowing how long we will be here, how likely we are to see a positive response for Stacy, what is going on inside Stacy's body we are still pretty much in the dark.

Today we drew a lot of blood and organised a really broad series of tests for that blood. Toxicity, chemical levels, lingering immunisation information, parasite existence, liver function, etc, etc. We did an evaluation of the energetic levels of Stacy's internal organs using key points (some word starting with 'M' should be here) on her hands and feet. We had a long consultation with the big wig Dr. Bruce Fong, D.O. H.M.D. Finally Stacy started some treatment which is standard for all patients at the center - an hour and half drip fluid that is designed to cleans the liver, and 2 injections that do some other stuff.

The plan at the center is to investigate what is happening in Stacy's body systems, to restore balance to her lymphatic, endocrine and immune systems and then see if in that process some negative factor that is damaging her body is removed. A bit of swinging in the dark really however with a condition in which the cause is unknown I guess there aren't many other options.

We are back in tomorrow for some more transfusions and injections.

Reno the town is full of restaurants, casinos and hotels, it is not overly pretty. It is however in a majestic setting. There are two very large snow covered peaks rearing up into the clouds close to town. Apparently the lifts only closed a couple of weeks ago and some people are still hiking up and skiing down, hectic.

We have some photos and plenty more stories to come. Sorry for the limited updates, Stace and I were saying tonight that just getting through the days are using up a lot of energy. We have had 3 pretty big days though - last day in GF, traveling, first day at the clinic. I hope that we will get into a routine soon. Liz does arrive in 2 days for the weekend.

Thanks very much for all the facebook, email, phone and in person love community. It has been great, stand by for a post about one such communication that blew us away - paper airplanes and everything (i'll let the photos do the talking on that one).

We love you.

Mike

Tuesday, May 18, 2010

We made it!

After 25 hours on the 'road' from Brisbane through LA, Salt Lake City, Great falls we made it to Chili's restaurant, and found ourselves set up with margaritas and meals the size of our heads. U.S.A, U.S.A, U.S.A.

Thanks very much to everyone who has sent us best wishes for our travels, it was nice to know so many people were thinking of and praying for us.

Stacy travelled really well given the challenges involved. She even had to be shipped off like cargo on a 2 wheel trolley/dolly type number. If we had the face mask it would have been a sweet Hanibal Lecter moment.

We slept for almost 14 hours last night with a 4am wide awake hour in the middle. Today Stacy is getting around pretty well and we are happy with her energy levels. It is beautiful here in the Great Falls early summer. We are looking forward to quite a few long and lazy evenings on the freshly renovated back deck.

Elk burgers and Ceasars for dinner tonight - yeah.

Lots of love to our extended family.

Mike