Saturday, September 8, 2012

Good'ish News!

We got a call from the Dr. today and we are happy to say that Phil's condition is not cancer! Instead, he has a very rare disease called Auto Immune Pancreatitis. There is little known about this condition, and alot of what we will be doing to get Phil better will be with minimal medical direction and mostly common sense. First and foremost he will start on Steroids which will decrease the size of the tumor. Most likely he will require another endoscopy in which a stent would be put in place. The stent will open up the passageways that are blocked and are causing him so much discomfort, thus erasing the jaundice and all of his other symptoms.

What IS known about Auto Immune Pancreatitis is that it's the mimic disease to Pancreatic Cancer. Often people are misdiagnosed and treated with Whipple surgery or the removal of a gall bladder, because all the signs are there- cancer. But it is not. This makes me less upset that the doctors diagnosed Phil with cancer to begin with. We are over the moon, realizing Whipple surgery will not be needed anymore. Neither will Chemo or Radiation. The blood and biopsy tests show he is 99% for AIP (Auto Immune Pancreatitis) and thus we will go ahead and treat Phil for just that. Steroids will start today, and stent endoscopy date will be played by ear.

As far as the long term recovery. AIP is a chronic disease that will need to be checked on and kept up with regularly. With the use of medications it can sometimes clear up completely or at least be managed for up to a year, then retreated from there. We are keeping positive, knowing he is young and will likely bounce back quicker then do the older people we have been reading about.

(pretty hard life huh??)

Phil is currently bed ridden, and at his worst yet. After every meal he experiences deep pains, pressure, and nausea. I am almost certain he has lost even more weight because he does not want to eat. We hope that the Steroids kick in fast and then we can start to feed him more and help strengthen and heal his liver, pancreas, gall bladder and bile duct before they are too strained altogether. This can result in diabetes, and other complications. We are blessed that this thing hasn't been going on for too long. At the most it has been dormant for about a year, rearing it's ugly head just over a month ago.

My plans for his recovery include a gluten free and almost vegetarian based diet. As far as meat goes, organic chicken and fish 2-3 times a week, if that. For milk products, organic light milk only-but not consumed often. He will enjoy mostly fruit, vegetables, limited whole grains, seeds, some legumes and nuts. Healthy fats like coconut and olive oil will be his only fat intake. Dairy fat seems to disturb his gall bladder. He will stick to almond milk. We will continue to include all natural whey protein in his smoothies. We will juice on a regular basis, as well as include daily light exercise like a walk in his schedule. Lots of water, and once in a while a small glass of wine will be okay. I have read in most message boards that diet can greatly effect the well-being of AIP sufferers.

I would also like to include acupuncture, massage and chiropractor, healthy teas and natural supplements to aid his immune system and the healing process. He will have to be on one or a few medications for his body to manage AIP, so all we can do is add in natural fuel to counterbalance the chemicals. I will continue to do vigorous research on auto immune diseases and how people have kept themselves as healthy as possible. I am still at a loss why Phil's AIP came upon him so quickly, and out of nowhere. It is very confusing as he is such a healthy and young man. Once again, prayer will help us to keep calm and find peace through this hard journey. Sometimes life just doesn't make sense, so all we can do is ride the wave!

As far as work goes for Phil, he will need at least a month or likely more to heal and regain enough strength to stand up for more then 15 minutes at a time, let alone a whole day leaning over vehicles and handling heavy parts. He is very weak, often hurting himself when he makes a simple movement because he is so atrophied. As you can imagine, my heart breaks everyday for him. There is nothing more important then me helping him to recover. That means I will encourage him to stay out of work as long as it takes. It could be months, but what can we do? One thing that he likes, once he is a bit better is company. Someone to just sit around and hang out with him. We will make you tea and treats and watch a funny show ;)

We are waiting to hear back if any employees at his workplace volunteered sick days that will provide him with some coverage. Also Phil has dropped off some forms at his place of work that would enable us to receive a percentage of pay while he is sick. We are praying for this as well. All of your generous gifts have helped in ways you could never imagine!! The food you bring to us, the meals, the texts and hugs and prayers - all of it is keeping us afloat and we love you all so very much. Some of you have let me vent and be a baby at moments and then you get me really laughing again. Now, that's true friendship! Just what I need ;)

Kay is here and has been such a help and comfort. We watch our shows and girly movies while Phil does research on the computer. We talk about how all of this has been an almost miracle, and that we could've suffered just as so many other families suffer with Cancer. But it just so happened we won't have to. I have a new appreciation and empathy for families who face cancer, because for a few wks we were certain he had it. All we can do is be there for those of you who suffer hardships, with the same embraces and texts and words we have received from you.

Above all, we are so so so happy Phil does not require the dangerous surgery we were in such fear of. AIP ain't a cuppa tea but heck, it's alot better then cancer. When we got the news today I just cried as I held Phil. I wanted more then anything to smile and cheer while jumping up and down, so I was confused why my body reacted that way. I think it was a cry of relief, and of letting myself be vulnerable after so many days of being brave. After a while I was smiling and he was smiling, as we called and texted friends with the news. In the end the results are very good. Not perfect, but good. And it will only get better from here.

Thank you for your support once again. I will continue to update you all via this blog, through our journey. Much love to each and every one of you!


kathy s said...

Dear Hollie and Phillip,
so happy to hear it's not cancer. Jehovah truly is a hearer of prayer. This is such a blessing.I know what it's like living with an autoimmune disease, and being on steroids, but with the proper diet and rest and of course a great support system like we have is the key to a better days. Also a lot of research on the disease to see what others go through and what doctors have to say about it help tremendously.I am so happy Kay is with you because she is such a wonderful mother so comforting and I'm sure she has been a real blessing to have around send my love and continue to keep us posted.
We love you guys
Kathy and Gerard Schiano

Overbecks said...

Your right, NOT perfect news.. But anything is better than cancer..
We are all terrified of the BIG C word..
We Love you guys, and as Kathy said above.. What a blessing from Jehovah!
We hope Phil is feeling better soon!
Jay, Becky and the Girls.

Eunoia said...

We love you so, so much it's borderline DISTURBING. You are an amazing wife, and I'm so glad that Kay is there - she is such a sweetheart. I have the nicest memories of her! Please hug Phil 42 times for me. xoxoxo

Goldani said...

Dear Hollie and Phillip,
I am soooo happy it is not cancer, my prayers goes out to you and the family.
Love you all,

luluxo said...

hi holly, luluxo here....thinking about you guys and really happy and hopeful for phils' new diagnosis... can't imagine what ya'll have been going through :(
sending love.........xoxoxo

Ali said...

hey Hollie & Phil. I've been catching your instagram feed and realising that Phil wasn't well. It wasn't till you posted a pic of an update on here that I found this blog.

My heart goes out to you and Phil - I know I only met you that once at Amy's in FL - you are a beautiful girl and Phil is lucky to have such an amazing, strong, and caring woman by his side. xoxo Ali