Friday, September 14, 2012

He's Doing Better

A quick update: Phil is doing much better since he's been on the steroids! He's up and about, and in better spirits. We are ecstatic! He is still weak and jaundice, but much better. As far as the lymphoma in the stomach (we still don't know if it's related to the AIP) we are leaving it till we see more improvement on the more important Auto Immune Pancreatitis. Phil will go in about a month from now to check up on how the tumor is looking and we will go from there.

He will need much more time to gain strength before going back to work. In the meantime, your gifts have been keeping us going and we cannot thank you enough!!!!!!! Hardest thing at this point is getting my boy to change his eating habits ;) Notice that I have edited some of his food guidelines here. I'm working on him! I am in recovering mode, quite exhausted and burnt out but at the end of the day, we're just happy it's not the C word and Whipple.

Kay has been helping so much with keeping the house clean and giving us hugs and encouragement constantly. She is a rock, I tell you! As you can imagine she is so happy her son is getting better :) She will be here another week and a half.

We love you and thank you for all of your concerns and support, once again. We have received all of your cards and emails! I promise you will be getting replies! Much love, Hollie

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.

RECOVERY
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!

Saturday, September 1, 2012

Surgery Postponed, Tests Continue

It is hard to remember all of the nuances of our days, but I'll try my best to share as much as I can with you!

First and foremost John Sr. is here! We have been chit chatting, playing Jeopardy on Wii and just spending time together. Pauline is also here, and is being supportive as well. They love their lime beers and the cool weather that's blown in.

I have seemed to reach a pinnacle of stress and exhaustion, waking up with migraines in the past few mornings, and having a hard time being sociable. All we can do is our best. I am feeling better tonight, as we were able to rest up a bit today.


Mom and dad have continued to keep the home running smoothly, constantly keeping the dishwasher and laundry going, helping with meals, organizing, providing what guests need and running us around. I honestly don't want to think about what things would be like without them here. I feel as though I'll never be able to thank them enough. They are flying back Sunday, as they must move out of their current rental in Las Vegas, into another apt. and are still waiting to hear about a job opportunity that's been in the works for a while now. Patience. They know that they are always welcome here if they would like to stay. At the same time Hannah and Jeff are moving into their new place tomorrow!

Kay is arriving Monday, and she is such a blessing and a breeze to have around. We are so close and have lived together before (8 months we lived with her in Florida to save up so we could move here) so I know she will make this time even easier. She needs to see her son, and I know she'll feel so much less worried when she is with us. She is a rock, and has not once cried on the phone when we talk to her. She has lost her best friend to cancer a few months ago, so you can imagine what she is going through. It will be good to be together.

The day John and Pauline arrived we got on Skype and I finally got to meet Phil's brother John Jr., his girlfriend and their adorable daughter in Ireland. He was very sweet and got me a little choked up with his sweet words to Phil. Even more choke-up-worthy are his efforts to raise money for Phil with his jewelry business in Ireland. You see more about it here

The gifts and cards and meals keep rolling in, and I am overwhelmed with the sheer amount of support! Everyday we hear how many friends are praying for us. You can't imagine how much that lifts our spirits. The day John and Pauline arrived a friend texted me and said that she would like to buy us all dinner and have it delivered to us. As you can imagine, it could'nt have been offered at a better time. That night we received what you could call a feast! It was DELICIOUS and in amounts that would feed a bus load of people! We were all so moved by the generosity, we will never forget it.

At the SAME time another friend dropped off bags of yummy groceries and artwork from their son which had messages on them saying, "get better soon". Flowers and fresh fruits and veg, eggs, juice you name it! Let's just say our fridge has no room left in it! All night we kept talking about how blessed we are with the brothers and sisters from the hall. Tonight, another friend dropped off a full blown tlc meal for us and the in laws. Not for one minute do we feel alone.


Phil has been feeling okay, with most of his pain at night. He has been able to manage it with his medication. He has a hard time sitting up as his back muscles have atrophied. So he is best resting, laying out the couch. His jaundice is ever more apparent, and it kills us to see him this way. More regarding the latest prognosis...news that has me confused in emotion but must be shared nonetheless...

We got a call from our Dr. saying that he wanted to postpone the surgery to retest the biopsy one more time. He wanted to see if indeed Phil's condition could be a 1 out of a million condition called Auto Immune Pancreatitis, treated simply with steroids. Of course this was amazing news. It is extremely rare and not much is known about it. If indeed the test comes back and shows this is what Phil has, the only cancer we will be dealing with is the lymphoma mass in stomach, which the Dr. said can probably be treated with antibiotics and maybe minimal radiation and chemo. He would get a stint to alleviate jaundice symptoms and improve his appetite while he waits for steroids to do their work (about 3 wks).

We are not getting our hopes up whatsoever. In fact, I have chosen to mostly ignore the idea of it because I have already braced myself for Whipple and I can't handle the letdown all over again. But of course, the chance of not having to face Whipple surgery is a huge deal, and providing everyone with some hope. We vacillated between the idea of telling people and not telling people, hoping not to bring everyone on the the roller coaster ride that this news entails. But we chose to tell everyone, so that we are all on the same page, keeping everyone up to date. If you are praying for us, the best thing to ask for is that the Doctors do as much testing as they need to so that they make the right diagnoses.

In our Surgeons words, he "would be the 3rd or 4th happiest man in the world if he didn't have to do Whipple on Phil afterall." Whatever this thing turns out to be, we will face it with bravery and the strength that you all and of course Jehovah God imparts to us. We will know the results by next Thursday at the latest. Patience is a virtue!

On a lighter note, look what family sent Phil yesterday!..




He loved it so much and we were laughing about it all day! He feels so special, and it makes my heart warm when I see him smile! Here are pics from later this afternoon. A beautiful cool and sunny day...



And in case you were wondering if Phil was getting enough comfort at home here's some proof...



I will keep you all updated when we know more! Much love and thanks again for all of your support. It means the world to see your comments. And just so you know I read them all to Phil! He loves them.