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11/29/03 Marcy Tells Me to Look for a Job From:
Rob Payne <rob@everydayisprecious.com> A
treatment that is helping Marcy Though Marcy is fighting off a cold and feeling puny today (Saturday,) we were in Philadelphia from 10/28 through 11/20 to try a new, experimental treatment that is helping Marcy. We have seen and are seeing improvements. Though they may seem small to you, they are improvements. It's going to be a long road, but we feel like she is taking the first baby steps in the right direction:
Though
not sure about the breathing thing, Marcy is now convinced she is
getting better. While at the clinic, I talked with Joe, a man who went from wheelchair to walking, and asked when he believed he was getting better. He said he believed the second week. "But," I asked him, "You were moving your arm the first week. Did you think that was a coincidence?" "No," he said, "I just thought it was too good to be true." The
treatment The
new therapy is called phospho-lipid exchange. It is a new way to
cleanse the liver in a way that removes neurotoxins. Their theory
is that the motor neurons have not been destroyed, only inhibited
from functioning. You
can read the science behind it at detoxxbox.com
Others
being helped Their
first ALS patient to receive injections (Joe, mentioned above) started
10/6/03. He came in sitting in a wheelchair, unable to move his
arms or legs. His second week, he was able to move his arms. By
the time we left, he had walked over 40 steps on his own. He continues
to improve daily. While
at the clinic, we saw another patient stand out of his wheelchair.
We met at least a dozen other ALS patients - each showing some degree
of improvement. The
doctors have case histories of improvements in patients with Autism,
Parkinson's, Alzheimer's, MS, Lyme, Fibromyalgia, Lupus, and other
neurological diseases. Though slightly outdated, you can find out
more about the clinic and make an appointment at their website at
Haverford Wellness Center. Marcy's
condition is more severe than any of their other patients. The born-again
Christian doctors and staff are excited about the opportunity to
help her and share our joy with each improvement. The
trip We
put a hospital bed in the RV and drove towards Philadelphia Sunday,
Monday, and Tuesday (10/26-28.) Since it is so hard to move her,
the doctors came out to the parking lot to give Marcy her treatments
in the RV. Marcy's mother made the trip with us, her father watched
the kids for us at home. Two
weeks into our stay, Marcy started getting homesick and Darcy wanted
to see us badly. Dean (Marcy's dad) drove Darcy the first half.
Our doctor's wife, Kim, took Karen (Marcy's mom) to meet Dean, drop
off Karen and pick Darcy up. Dean and Karen went home to Southern
Illinois to finish making preparations for their move to Florida.
Karen
was fine giving up her space in the RV: she is convinced that Marcy
is getting better and she was beginning to get a little case of
cabin fever - or is it camper fever? How would you like to spend
almost every moment of almost 2 weeks in a 20 x 8 foot room that
bounces most of the time? Without your spouse? With your in-laws?
Matthew
opted to stay in Franklin with a good friend.
A
few more of the family's good deeds are mentioned in the Tennessean
column from 11/21.
God's
hand in our trip We
felt God's touch on almost every part of our adventure. Friday
morning 10/24 I did something I had never done before. I cried out
loud during my morning prayer time, asking God for a change, a sign
of encouragement. I told Him I know that Marcy is His - but asked
to please let her stay here a while longer - please bring change
- not because we deserve it or are doing the right things, but because
of His Grace. One
hour later I answered the phone. Sue Massie was on the other end
of the line talking very excitedly about a new treatment in Philadelphia.
We have talked with Sue off and on for the last few years. She is
very enthusiastic, always excited, and speaks with great conviction
about her beliefs. We have tried a few of her recommendations with
little success. But
as Sue was talking this time, I got the same feeling that I get
during my prayer time, when I'm with Spirit-filled people, and when
God is talking to me in church. Jesus was in this call. I
told Sue that I had just prayed for a change and this could be it.
Sue said that God had told her to call us with this treatment. Though
the clinic was booked through the end of the year, they graciously
gave us an appointed for 2:30 the following Tuesday – they
are closed Fridays and Mondays. I knew it would take us that long
to prepare and get there. You
may remember from prior emails that we've had our motor home for
sale for the last 7 months. If it had sold, we wouldn't have been
able to get Marcy there. Marcy's golf tournament was Monday 10/20 (the Monday before the call.) Though Marcy couldn't go, the tournament raised almost the exact amount of the cost for the first few weeks of treatments. For
six weeks prior to finding out about Philadelphia, we had been trying
to get in on a new drug trial in the Bahamas. The drug is not FDA
approved for use in the US. There was no way to get Marcy there
(even though I had looked into taking a ferry from Florida to the
Bahamas.) So we were trying to get FDA approval for a single patient
emergency trial. After four weeks of work we hit a stand-off when
the FDA wanted more specifics about the manufacturing process and
the manufacturer didn't want to give it. We hadn't even gotten to
the part where we would have to send the company $20,000 in advance
- money that we don't have. I had wondered why the doors weren't
easily opening for the Bahamas treatment then the door to Philadelphia
opened. Last but not least, our doctor and his wife prayed with us before the first injection and during many of the following injections. There are more details on this in the 11/21 Every Day Is Precious newspaper column. The bad news about the treatment The
good news outweighs the bad by a ton, but the Philadelphia treatment
is not cheap. Our expenses for Marcy's supplements have gone from
$400 a month to $600 a week. We
know that God will provide. He always has.
Moving to Other News A Cold Day in Heaven
Marcy had Noodles before she had me or Matthew. Noodles was so protective of the family, especially the children when they were babies, that Marcy often called her Nana. Even in her old age, when she was half blind and 90% deaf, she barked ferociously when she thought there was trouble. When I first met Noodles, it took her awhile to accept me. She never bit me, but she looked at me with great suspicion and doubt for the first few years. She
was one of those dogs you could just talk to. She could understand
what you were saying with just words – you didn't have to use
dog commands. When
we returned from our trip, Noodles was yelping every 10 to 20 minutes.
Truth is, she was doing it before we left, but we had just gotten
used to it. We didn't want to think about the pain she was in. I
believe that dogs have souls and that all dogs go to heaven. I also
think that heaven is so wonderful that we can't picture the good
things that happen there. All we can do is picture our favorite
activities here in this world. Being an American Eskimo, Noodles
loved this time of year and especially loved the snow. One of our
video highlights is Noodles helping Matt dig in the big snow we
had here in Nashville in 1994 or 1995. Last Wednesday, I think it
snowed in heaven. Darcy said it best in her prayers the night I took Noodles to the vet. She asked Jesus to play with her and take care of her until we get there. Something more uplifting
Darcy contines to enjoy painting and is filling our mantle with canvas:
Not to exclude Matt As is normal for a 14-year-old, Matt spends much of his free time with his friends, so there's not as much about him on this site as we would like.
His feet are bigger than mine, but not as big as they look in this picture. September and October Marcy Outings Since getting the van, I've been trying to keep up with and post the times we've gotten out of the house. Between our last update and our trip, we had a few outings:
Every Day Is Precious in the Tennessean I was able to email columns while in Philadelphia. There are lots of new columns since our last email. Click here to see them all. Contact
information changes If you have our fax number in your address book, please note our new fax number is 615-250-0510. Specific
Prayer Request Our specific prayer request right now is that Marcy shakes this cold quickly. We continue to thank God each day for your prayer and care. Rob
& Marcy |
