July 31st - Monday

We spoke with Dr. Tantawaya (Dr. T) again this evening, he gives us the following information:

Dr. T has found a rare disease named Granulomatous Angitis discovered in a young boy. The child's symptoms and MRI pictures match my symptoms and MRI. The treatment for this is with Steroids--prednisone. They started me back on this steroid two days ago at a low dose. However in order to do anything for this type of illness, they would need to hit me with very very high does of this drug. There are consequences to this drug at high levels. At this time, I have decided to take the drug in small doses.

In addition, today I had a minor surgery which was a biopsy of the muscle in my right leg to look for Sarcodosis. There is a small chance that I may have this disease.

Jeanne has found a few doctors through the Syrimoyelia Alliance Foundation that Dr. Tantawaya wants to contact. I will be waiting for my sister-in-law, Lisa, to set up a web site with all my abstracts including the MRI.

We have the results of the MRI of my back, good news, there is now new growth nor any inflammation.

There is what is called a Syringomylia. If you would like to know what this is here is the Website ------www.asap4sm.com

The goal right now is for me to continue with my physical therapy and occupational therapy, move the rehabilitation center and get real strong.

Dr. Tantawaya will then go back into my spine and place a shunt into the spinal cord which will drain into my stomach. He would like to do this as soon as possible but I really need to be much stronger.

On to other good stuff, I now no longer need any assistance from any catherther or rectal support, both working good by them selves.

My stomach looks great and is healing nicely as is my leg from the donor site. The nurses are trying new pain meds to move away from such strong things like Morphine.

Gaia came home this weekend and it was wonderful to see her and touch her!

We had a family conference this past week and have a good plan of action for Debbie and all the family.

Thanks again for all your concerns, support and love.

~ Peter

July 26th - Wednesday - Day 62

Update from Peter . . .

Several things are missing since my last update.

I am off the Foley catheter, off the rectal bag which was a pain in the ass.

Got the TRACHEA tube removed three day ago and the hole is closed. (Trachea tube was placed in the small of lower throat so I could breath easier and to allow suctioning.) Having had this artificial tube in my throat for longer than one month, you can imagine how pleased I am to have it out. Debbie has taken it home since it has been one of the most widely talked about pieces of equipment since I have been here. Really blew me away how big it was when they took it out. No wonder I had a sore throat from hell.

Pneumonia is cleared up with antibiotics.

Biggest obstacle has been nurse assignments when my primary nurses are off. Most have been okay or very good, but a few have actually done more damage than good. Have met with the charge nurse to resolve these issues; feel very comfortable with everybody who will be caring for me now.

Having a swallow test on Thursday which will determine if I can eat solid food and drink liquid. Gotta tell you after 62 days, I am pretty damn thirsty!!!!!!!

I am still having visions of tuna sandwiches on wheat with all the stuff dripping al over the place. More to come as things change here.

Appreciate everybody's prayers. If you are going to pray, pray for the pain to go away more than anything. It inhibits anything I try to do.

Love to all my family, friends and co-workers.

~ Peter

July 21 - Day 59

Been a week of recovery from skin graph with a whole lot of laying around, without much activity and new sets of pains to accompany the old ones.

The pneumonia was a minor set back and is being treated aggressively.

I do have an infection in my upper respiratory system. Caused by the TRACHEA I have and this damn tube sticking in my throat. No one can seem to make a decision to take it out or to leave it in, quite frankly, I am sick of it. One doctor has committed to coming up with a decision tomorrow and I appreciate that greatly.

Weekends are pretty unstructured neither PT or OC happen, both are off for the weekend.

Had a visit from the rehab doctors today, concensus is, I should be ready to go to the rehab hospital within two weeks, barring any unforeseen circumstances.

Nothing else new to update other than still trying to find the solution to the pain in my legs, which is draining on a daily basis.

Thanks for all of your caring, cards, emails and concerns.

~ Peter

July 19 - Day 57

From Lisa . . .

Well, after several days of positive updates . . .
I have one that brings news of a small set back.

Peter's skin graph surgery went well, but he has developed pneumonia. This will delay the removal of the trac. Antibiotics started right away.

Due to a lack of proper hydration [read - human error] . . . Peter has also developed a bladder infection. Grrrrrr. Something that could have been avoided.

Physical Therapy has stopped until the graph sites really “take hold.” The lack of physical activity and routine has naturally given way to depression.

We go on with our lives, praying for Peter's recovery and thanking God for all He has done. However, Peter continues to wait patiently as his body recovers.

The phone calls have died down and the visitors become fewer and fewer. If you have a minute, give him a call - or drop him an e-mail.

Tomorrow morning Peter will actually get a chance to go outside. First time in 57 days. He is going to have to travel to another building within the Sharp medical complex. His neurological surgeon has ordered a MRI. Back to finding the answer to the original question . . . was is wrong with Peter's back.

I'll keep you posted. Thanks for your faithfulness.

~ Lisa

July 18 - Day 56

From Peter . . .

I did not realize how wiped out I would feel from the surgery, but I am wiped! Having a difficult time with the food bag be reintroduced, causing a lot of discomfort in the stomach and we won't even talk about what the rectal bag is doing.

I am running a low grade fever still can't figure out what is causing it. The donor site for the skin graph doesn't really hurt so far, nor does the arm. The stomach feels very tight thought.

Now it is more important that they roll me from side to side so my lungs do not get infected again, ---I hate being rolled----- but know that it is best for me.

The pain is the legs is still their but not as bad lately. I cant' have any physical therapy until the graph takes hold, maybe Sat or Sun they will reassess.

I am still having Occupational Therapy, but only in my left arm because of graph in the right. I want to be rid of the three lines still going in me,

I walked into this hospital, I will walk out.

Debbie and Jeanne took a tour of the rehabilitation hospital today, sounds like they have a very regiment schedule there.

Tomorrow my Trac will be taken out and then on my way to passing a swallow test. Will keep you posted.

~ Peter

July 18 - Day 56

Peter had his skin graph surgery yesterday. This is the first step in closing the hole in his abdomen. In 3 months, or so, he will have another proceedure to help tighten up the area.

It is difficult to explain what his abdomen looks like. It has been very uncomfortable. Hopefully this will help.

No more procedures scheduled, except to remove the trac. Hopefully in a couple of days. Soon then after he'll be able to eat and dring like a normal person. Oh, that's weird - referring to Peter as a normal person.

Soon he'll be off to the rehab hospital - learning to walk again.

Please continue to pray for him. He's got a long road ahead.

A bigger room has become available for Peter! --YEAH--
Please note he now is in room # 761.

~ Lisa

July 15 - Day 53

Going to have skin graph surgery on my stomach Monday afternoon at 4:00 pm. Not really looking forward to more surgery, but, you have to do what you have to do.

As you know Jeanne and Debbie have learned a lot of techniques in my physical therapy and my recovery.

Well, we can now add GAIA GIRL to the list now. She has learned all my therapy exercises, she is making sure I do all of them with both hands, no cheating.

The whole family is part of the medical team now.

Starting Sunday, the staff is going to begin a new procedure to get me transferred out of bed---oh I can't wait---
They will use a lift called EZ LIFT.

They will place a netting underneath me then lift like a sitting position into the Cardiac Chair............

This should make the rectal bag situation easier.........

yeah right.......

......and my prediction of this procedure
......NOT!!!!!!!!!!!!!!!!!!!!!!!

Today I had a dream that I was given a ticket for being naked ....Don't know what that was about......

~ Peter
July 13 - Day 51

The days are very exhausting with physical therapy and everything else.

On Monday, July 17th, Dr. Brame will do the skin graphing from my right thigh to my stomach. I do not know what time this will be right now, will keep you posted.

They have taken me off the IV line now and are just giving me water through my tube feeding.

After the surgery within a few days they will take my Trac out and I will be on my way.

If all goes well I could possibly be going to the rehab hospital by the end of the week.

~ Peter

July 12 - Day 50

Another update from Peter:

I need to recognize some people who have become part of my recovery team and have come to Love them.

First one is my dedicated nurse, Qixia. Who has tended to my every need coordinated my therapy, brought together family and counselor for conferences. In general, she has taken such good care of me I feel like I am in the hands of an angel.

Second ---my night nurse Tari, whom I only get two nights a week. She is the has the most soothing personality I have ever come across. And she really helped me during a period when I was really scared and made me no longer scared.

Without either of them, this battle would be more than I could handle.

Let's not forget the two most important members of my team.

Debbie, just give me a little "Debness" and sister Jeanne - who will chase it down and kill it if necessary to find out if it belongs in my file.

Between the two of them and the many hours of just sitting with me throughout the pain and helping me to get off to sleep cannot be measured in words or anything else. It is my job now to make sure the new schedule they have come up with is adhered to.

Please during the week day limit phone calls to after 4:00 pm. I am kept so busy by the wonderful staff her helping me do my job that I am exhausted during the day.

~ Peter


July 11 - 11:45 p.m. - Day 48

Peter is doing so well. He still has a long road ahead of him. He now has a lap top and is able to address some of your e-mails.

The Marion sense of humor is helping to get us through this difficult time. This is none the more evidenced than in Peter's Website update I just rec'd.

As the messenger . . . I bear no responsibility for what you are about to read:

Peter begins with: "Debbie, Jeanne, Al and I met with Barry Bernasconi today from the Sharp Hospital Social Services. He's a Patient/Family Counselor who will follow me through my recovery. It's nice to have another depth of support from him for the whole family."

Jeanne adds her two cents: "Peter looks better and sounds better today than he did yesterday. I love him more today than yesterday.

Peter's reply: "It's because he's new and improved. Take the box tops off the back of my head and mail them in for an update! Save up six or more box tops and send them in for your replacement rectal bag kit complete with instructions. Figure it out if you can. If you can't then you don't want to know."

Sorry, I warned you ;-)

July 10 - 11:45 p.m. - Day 47

- This update comes straight from Peter! -

Regarding my condition, skin graphing on my stomach planned for this Friday or Monday, to close over the belly.

Monday through Friday, aggressive schedule with PT and O. C.
10:00, 1300, 1500 hours.

I have redefined the term pain for my physical therapy. If all goes well, I could be in the rehab hospital next week.

Still waiting removal of Trac in my throat.

Have started new pain medications for legs, pain has really increased.

I now have a " Peter's Formula" posted on the board for my night time cocktail.

Very busy from morning until 4:00pm mostly resting afterwards. So best time to call will be after 4:00pm. I will check e-mails but not until night time.

-----FLASH UPDATE-----
Maybe Trac out tomorrow!!!
More fun stuff to comeeeeeeeeeeeeeeeeeee.


July 8 - 11:45 p.m.

UPDATE:
After 3 years of trying, ASM finally won the "Sailabration" Contest for Spangler Candy. Company receives bonus check for exceeding quota, Peter gets to go on 3 week Mexican Rivera Cruise with other winners and Spangler owners. Also, Advantage Sales was voted western "Broker of the Year."

On another note, condolences to Larry Crouse, who recently lost his father. Larry is a big supporter of Advantage and a very close personal friend.

Our prayers are with you and your family, Larry.

July 7 - 11:45 a.m.

I spent the day with Peter yesterday. He looks great! His eyes are clear and focused.

The Occupational Therapist was there in the afternoon working with him on fine motor skills. He was so patient. He was calm and listened to her every word. They worked on small movements of the face, neck, and hands. He will start out slow, just tightening the muscles in his neck. She also had him spreading his fingers as well as opening the flip top on a bottle of lotion. He has a long way to go - he knows it and is committed to doing his part! Pray for a continuation of his determination.

The doctors hope to be moving Peter to the Rehab portion of their facility next week. Pray that this plan moves along.

His brain is working great . . . the body will be slow to follow.

Sorry another change in e-mails. 10 years from now I expect all computers will work perfectly, just the way you want them to . . .

New e-mail for Peter is below:

PeterCMarion23@aol.com

Any e-mails you sent to the other address have been forwarded, don't worry. No need to send them again, just begin using this one.


Other contact information for Peter is a follows:

Sharp Memorial Hospital Peter C. Marion Room 762 7901 Frost Street San Diego CA 92123 858-541-3400

July 3 - 8:45 a.m.

FLASH 7/2 Peter Speaks! First time in 3 weeks. May have my own voice back within a day or two. Thank you everybody - for being there.

That's right, from Peter himself.

Yesterday, Al and I rec'd a phone call. It was Jeanne. Her voice stumbled, "Uh, yeah - hold on."

There was a russling sound then a crackly whispering voice said
"Hi, brother." It was Peter!

He wanted to know if he could borrow my lap top. He is ready to make contact with the outside world.

Due to technical difficulties we have had to set up a different e-mail address for him. Please change you address books and use the following e-mail address for him:

PeterCMarion23@aol.com

When I got the laptop set up I showed him the "Peter Website." He was pleased. Then I instructed him to scroll down and see how many visitors he'd had . . .

He was amazed and deeply touched by over 1600 visitors. 


Want more? Click on one of the following links . . .

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