Update

Thanks for the comments.  I forget to post as often as I had in the past, partly due to the fact that my wife is doing so well following her 5 day ketamine infusion.  I will do better in keeping people updated in our journey.  Yes, Allison is currently on a regimen of having a three consecutive day, 4 hour ketamine infusion of 60mg per hour, every other month.  Her pain levels are very low and she is almost off all pain medication with an exception of a vicodin here or there.  Keep in mind that she still needs to relax and not overdue herself, which is easy said than done since she has been limited for so much of her life in the past 13 plus years.  Her pain doesn't get any higher than a 4 and that is after a week of working.  She mostly hangs around the 1-2 range but is able to do just about anything without over doing it.  She knows her limits, which is good.  There is a possiblity that she will undergoe a second 5 day infusion within the nexy year too knock out the symptoms completely, depending on the recommendations of her doctor's.  The good thing to know is that a huge portion of her procedure was covered by insurance after going through the appeals process.  We even had enough money through our fundrasing efforts to make a donation the the Neurology Department at Drexel University for continuing there research to find a cure for RSD.  Good journey.  Keep the faith and know that there is hope.  I would recommend the short journey of the ketamine treatment, even though how mentally exhausting and terrifying it was compared to a lifetime of continuous agony and pain both you and your family members have to deal with emotionally for not being able to help your loved one with RSD and the physical pain they are experiencing everyday of their life.  If your wife is physically healthy regarding her heart and other organ function, I would totally go for it.  Feel free to write anytime and again, I will do my best to keep up on the blog.

Allison's Fight going well!

I will start off by saying, sorry for not keeping followers updated but at this point, no updates pretty much means Allison is doing well.  Since her June procedure, she has had oupatient ketamine infusions lasting for 4 hours on three consecutive days each month since July.  She just finished her last round this past Friday and now will begin going every other month for the time being.  Believe it or not, we still have not received our hospital bill as the insurance company and hospital are still back and forth about who is going to pay for what.  We have the feeling that the hospital will be sending us a bill soon.  Anyway, donations keep trickling in here and there and we just broke $23,000 last week.  Thanks again to everyone who has supported Allison and our entire family since we began this journey.

Allison Update

Well, well, well...Since Allison's 5 day procedure in June she has had 2 series of 3 day outpatient treatments at Wentworth Douglas Hospital in Dover, (all covered by insurance, thank God, at $7500 a session).  She most recently was in treatment as part of the doctor's plan this past Wed-Fri, August 4-6.  It was strange for Allison to go into an infusion for the first time feeling pain free.

Allison says she has been "reborn" and isn't it the truth.  Allison has continued to do things she wouldn't have imagined doing ever again, watersliding at Water Country, staying on her feet all day and night long at our annual neighborhood party, enjoying a windy day at the beach, jumping in the pool, using exercising equipment, taking a shower daily, wearing more tight fitting clothes, watching me play hockey at an indoor arena, sitting on a wood chair in a resturant, and being like we are on a second honeymoon (that's all I will say about that), just to name a few things that many of us take for granted each day.  At the top of  Allison's list is going to bed not crying and waking up feeling rested and again, not crying.

For everyone out there who feels they have it bad, someone out there has is worse, much worse.  Live each moment like it's your last and don't take sleeping at night, going for a walk on the beach, sitting by a camp fire on a windy night, or hugging your family for granted.  Believe it or not, there are people out there who cannot do these things.

For those interested in knowing about the hospital bills, we are still waiting to find out if the insurance company will cover any of the cost.  Initial bill was for $41,300 and so far insurance paid for $4,800 of the doctor's fees leaving a balance of about $36,500 and we raised about $23,000 thus far.  Thanks you everyone who donated or helped raise all the money thus far.  It certainly makes things more manageable and worth every penny.

In hope and in health to everyone,
Greg (Husband of the bravest and most courageous person I have ever known in my life)

Update

So since Allison and I have been back from NY, Allison has done somethings that she hasn't done in a very long time.  When I say long time, I mean about 10 years or so.  She went swimming with myself and Griffin at the pool, she kicked around the soccer ball at the beach, she put on a pair a jeans, and she took a shower, all of which did not cause her any pain.

Just when she was starting to feel great along with being able to carry on a conversation without getting dizzy or having a headache, she is back in Dover Hospital for three days of outpatitent infusion therapy, all part of her on-going treatment plan.  For 4 hours, she will get high doses of ketamine, 60mg per hour, which started on Wednesday of this past week and ends today.  She will be back again in another month.

Stay tuned...

Home Sweet Home!

Although we were away from home to get "healed", it was so nice to leave New York City after a hellish week.  To see my wife, bleeding from the nose, eyes, and mouth, crying, screaming, shaking, thoughts of suicide, paranoia, visual and auditory hallucinations, images of death, monsters, dark, and fear (the list can go on) made me without a word to say to except that I couldn't believe how much she could handle.  For all the things she had to endure in a very long week sums up how much pain she has been in for a very long time and what she would do to make it go away.

Allison's back is quite sore from having an epidural for 4 days while she was having her infusion.  Headaches are becoming less and she is starting to have more mindfulness with each passing day.  Right now her pain is gone but feels "different".  Perhaps her brain has been so confused over the past 12-15 years she doesn't know how it is supposed to feel.  Only time will tell.

For all your reading pleasure, Allison wrote some of her own thoughts and notes while "under the influence" during her infusion week.  As typed by Allison using her Samsung Moment Android Phone, (plug for Samsung, she loves her phone,  "Greg is my Edward Cullen.  Everyday, he showed up with a smile that took my breath away.  It filled my room and my world.  When he breathed in, I could exhale and when he exhaled and I breathed in, we were complete, nothing else mattered.  He reassures and consoles me.  I wouldn't be able to do it without him.  When people say they are scared of the shadows or that there are monsters, believe them, they are real and they do exist.  I have never been so scared in all my life and am unsure if I will ever like the dark again or go into the basement for that matter.  Whatever you call it....God, good energy, vibes, aura, karma or meta-chlorian counts (for star wars fans), it doesn't matter because it is true and it exists.  People may think its nuts but Greg and I grew stronger this week.  In a way, it was a sick twisted second honeymoon.  You don't need things like money and going on trips...all you need is LOVE!  What I did learn is that love is the only priority.  As long as I have my family: Greg, Griffin, Bella, Max, Kirby, Mom, Dad, Tim, Sue, Gavin, Ronan, and friends too, nothing else matters.  If I can't worry...enjoy the things I can do in the company of th eones I love and that love me back.  Whatever happens, we have each other and Harry Potter books help along the way."

Please note that there were plenty of typos and grammar mistakes that were fixed.  Not bad though for someone completely out of their mind.

Day 5

Allison made it throught the night again but barely according to her as "nurse ratchit" was her nurse for the night. Allison was convinved and paranoid that she was trying to kill her by giving her the wrong medicine and tying a turnakit on her arm during the night.  Regardless, Allison will have a different nurse tonight.

The ketamine is up to 60mg an hour, which is enough to special k to make about 60 people feel "special".  Her pain is completely gone and is using a normal cotton sheet for the first time in about 12 years.  She has lotioned her left leg without any pain.  Tears have been streaming down her face quite frequently as she can't believe how she feels.  "If only it stays this way" she keeps saying.  Allison has stated that she has a new outlook in life no matter how much relief she ultimately gets after being taken off the ketamine.  "The only thing that I care about is my family and friends, I am a wife first, a mother second, and a daughter/sister, and friend next.  My career as a teacher completes me but that comes after everything else."

To get Allison through these past few days, I have been reading Harry Potter and the Deathly Hallows to her.  She tries to keep focus on my voice and words as "fairies" "demons" "ghosts" "monsters" and "bright colors and sparkles" float around the room at the same time.  These are just some of the things she tells me and will not let me in on what she calls "very very bad things".  One can only imagine what this can possibly be.  She has told me that she has seen explosions, fire, and death quite often.  I think it is because we watched the movie 2012 just before coming to New York.

Allison is in PT now for the second time today and all of her treatment team have never seen a ketamine infusion patient handle this as well as her despite how bad it has been for Allison.  She has set a new record at the hospital for getting the highest dose of ketamine while maintaining her medical well-being.  Most people have told them to stop the treatment while Allison keeps telling them to raise the does and keep it coming.  She is so scared that the pain will come back but it prepared to handle again if it does.  We thank all of our friends and family that support us if or when it does.  Let's keep our fingers crossed.

Something good comes out of everything.  No matter the end result, Allison and I have been brought even closer together, if that is even possible.  We have experienced this together.  We both know what is important in life; friends and family.  Stop fighting, stop complaining...enjoy what you have and don't take a single moment for granted.  Life to too short and way to precious to have resentment, hatred, grudges, and fear.  Love life, love friends, and love your family.

We are on our way home tomorrow as soon as Allison is medically cleared.  The ketamine will be slowly titrated tonight starting a midnight until it is no longer being infused, which will be about 5a.  She will then be off the ketamine for 5 hours and we will be on our way.  The recovery for Allison following this will be a good 4-5 days of needing to be on some anti-psychotic medication.  She will then slowly get her own mind back over the next week or two and hopefully feel "reborn"  She will still need some "booster" treatments in an outpatient setting in Dover at Wentworth Douglas Hospital.  This is all part of the treatment to keep the pain away.  By the start of the new year 2011, Allison will hopefully only need a 2-3 day outpatient infusion of ketamine for a 4 hour period, 3-4 times a year or less without being on any pain medication for the first time also in over 10 years.  We will be having a narcotic yard sale when we return.  Just kidding....although I know some of you were hoping otherwise.

The doctor has told us that the bill will be in the mail  Oh, we can't wait.  It sound s as though a couple more fundraising events will need to be planned and your all invited.  We cannot wait to get the hell out of here although every moment has been worth it in the long run.  We miss you Griffin and love you very much.  Hang on to the loose tooth, we don't want to miss your first lost tooth.

Thanks to everyone!  We love you all!
In hope and love, Greg (and Allison if she could write)

Day 4 continued...

Allison is doing very well today. Her epidural site it a bot irritated due to the nurses putting tegaderm tape on her back after the lead was pulled. Here is Allison's exact quote, "Doesn't anyone read the f$#@%ing chart before they do s$#@! It says ALLERGIC TO TEGADERM!!!" Anyway, Allison has a bright red and raised rash and was given benadryl, cortisone cream, and an anti-itch drip into her IV. Her itch is gone!

Allison is now again in PT singing the song to Driving Miss Daisy as she strolls along with her new best friend in the hospital. The physical therapist is adding a new component to her day which she looks very forward to seeing. Allison is still getting 55mg of ketamine every hour along with a stead flow of versed to help with side effects. She is becoming a pro at distinguishing reality from her fantasy world of ketamine. She is convinced that the people we know to have brilliant minds are really brilliant but that they were all high on drugs and were able to write down what they experienced during their "trip".

So, that pretty much sums up the 4th day. She is looking forward to finishing up and coming home to her family and friends. She is somewhat scared to return as well as she fears that the pain will return. It has been a crazy week for us to say the least. Allison is scheduled for discharge on this coming Saturday morning.

Thanks and Signing Off with Hope.