June 4, 2000

Dear Family,

It is almost 11 PM on Sunday night, and I'm sitting in our hotel
room in Redwood City. We got to the hospital last night about
7:30 PM and spent several hours with Skylar and Suzanne. God
has graciously continued to hear and answer our prayers for our
dear grandson.

I had not seen Skylar for more than a month, and the last time I
saw him he was still on the ventilator - and so it was very good
to see him and hear him. The change in Skylar is dramatic! He
is so much more like his "old self" now - he can speak well again
and with good volume. He is quick to smile, and was evidently
very glad to see both Pam and I. His mom and the nurses told us
that he had been waiting very impatiently all day for us to arrive.

Skylar looks much better now even than the pictures which have
already been posted on his website ( http://skylar.cjb.net).
Perhaps the most dramatic thing is that his hair has grown in
enough to look pretty normal! Also, his thigh muscles have filled
out somewhat more. Although he is still too thin, I can see real
progress. It was also great to be able to give him a real hug
for the first time in months! After seeing him, talking with him,
and hearing him speak, I am reassured that God has preserved his
mind as completely as I am able to tell.

I took him for a ride in his wheelchair down to see the model
trains on the first floor. One of the two trains was running, and
we watched it enter and exit a tunnel. Skylar also pushed some
of the buttons on the display, activating sound effects. There are
various train whistles and steam engine sounds, but Skylar's (and
my) favorite sound effect is a steam caliope.

I showed Skylar pictures of Papa and Uncle at Magic Mountain.
We sang some songs (I brought my guitar along) and then finally
and reluctantly after saying "good night", Pam and I headed for
the hotel and went to bed.

This morning we picked up some Starbucks coffee and showed up at
the hospital. Skylar was ready to play, and he and I went out in
the hall and shot his "Vortex Tornado" gun, firing rubber rings at
an exit sign. One marvelous improvement since the last visit is
that Skylar is no longer on any type of I/V infusion. The only
remaining tubes are the nasal cannula that delivers oxygen into his
nostrils and the gastric tube that delivers food to his stomach.

Oxygen is down to 1/2 liter per minute now, and they only check
his saturation periodically. In fact, when we left tonight it had
been turned down to 1/4 liter per minute. His gastric feed is
done in three "boluses", i.e. three meals per day, and a continuous
trickle overnight.

Pam and I put Skylar in his wheelchair and headed for the train
again, hoping to get him to walk a substantial portion of the way.
However, he adamantly resisted walking -- I think mostly due to
a short night's sleep -- and so the best we could do was to get him
to stand up for a minute or two after we got to the train set. We
went outside into the courtyard, where he picked out a flower each
for his Mom and his Nana. Papa picked the flowers for Skylar because
he is not allowed to touch any plants yet; his immune system still
needs to recover much more.

Later, after returning to his room, we had better success and more
fun. We played with a top that I brought for him - he enjoyed
spinning it and watching it spin. His coordination and his ability
to use his hands have improved immensely since I last saw him. His
strength is definitely much greater. He and I did some "horsing
around", thumb wrestling, etc. and I can surely see the improvement.

I read Skylar a book about the Good Shepherd, how He leaves the
flock to go and rescue the lost sheep. At the end of the book,
Jesus is identified as the one who finds us "lost sheep" and brings
us back. We played the guitar -- I fingered the chords, and
Skylar strummed -- and sang "Someone Has Risen to Heaven", the
song Sklyar wrote several months ago.

Later in the afternoon, while Mom and Nana were out of the room,
Skylar got out of bed and he and Papa took a "trip to the moon"
in our imaginations. This, of course, involved Skylar walking all
around the room, getting in and out of a "rocket ship" (a chair),
flying to and from the "moon" (the adjoining ante-room) where we
explored a moon cave and found a moon rock to bring home again.
Skylar then visited a "TV station" (the other end of the room)
where he stood at a "podium" (an end table) to answer questions
put to him by a "reporter" (Papa) about his lunar voyage.

This evening, Pam and I managed to cajole Skylar into eating several
green beans, a half dozen bites of chicken, several spoons of
applesauce, and a few sips of juice. I played the old "here comes
the airplane, open up the hanger" child-feeding game with him. I
did have to alternate between aircraft, trains, race cars, and
rockets...

Nana gave Skylar a bath while Papa carried a bunch of "stuff" down
to the car in a wagon and went out to bring back dinner. Skylar
got to play in the water (just a basin - he still has to have
sponge baths) and had fun!

I've probably missed telling some events, but, all in all, it was
a pretty full day. I think we wore Skylar out; after working with
Papa on the computer and drawing some pictures, Skylar fell asleep
shortly after eight PM while Papa was sketching a picture of his
famous Flying House ( http://flyinghouse.cjb.net ). Skylar's hand
and eye coordination with the computer mouse reassures me that God
has preserved his sight.

We had some outstandingly good news today about Skylar. First and
foremost, we learned that there are no plans for "maintenance
chemotherapy" after this. This is excellent news because the
chemotherapy is so toxic and depresses Skylar's immune system.
Second, in about a month from now Skylar will have a number of tests
done to evaluate his immune system. If all is well, at that time
he will be able to have his "Hickman catheter" (a central line
that provides easy acess to his bloodstream) removed. Then he
will only need quarterly CAT scans to monitor his condition.

We thank and praise the Lord for this very encouraging news and for
the very evident progress in Skylar's strength and health. Tomorrow
morning at 10 AM Skylar will check out of LPCH hospital. He is
on his way to a nearby rehabilitation hospital for about two weeks
of therapy to finish getting him ready to go home. The period could
be a little longer or shorter, depending on Skylar's progress toward
his rehabilitation goals. After returning home, Skylar will continue
to have some physical therapy and will still need to remain isolated
from crowds and public places for a while.

We also received some sobering news since arriving here. You may
recall that there were about five BMT (bone marrow transplant) kids
who began their treatment at about the same time. Skylar, Luda,
Peter, Katie, and Wen Long. Of the five, Skylar, Luda, and Peter
were transferred to the Pediatric ICU. Skylar of course was on
a ventilator for six weeks, unconscious for the first four weeks.
Peter died on the day that Skylar was awakened. Luda is still in
the PICU with severe brain damage. We just learned that Wen Long
has also died from BMT complications.

Of the five children, only Katie came through the procedure without
suffering serious complications. I will leave it to you to draw your
own conclusions as to the merit of such a treatment. I would urge
you to at least discuss the BMT with me before submitting yourself
or a loved one to this treatment. Yes, Skylar has survived the BMT,
in my opinion completely by the grace of God.

Well, this letter has certainly become longer than I expected. If
you are still with me, thanks for your persistance. Thank you all
most of all for your love and prayers, God has heard! Please pray
for Skylar's complete recovery and for strength and courage as he
spends this time in the rehabilitation hospital. Pray especially
that he will regain the desire and ability to eat normally, and the
courage to move and walk regularly.

And, above all, thank the Lord with us! God has truly blessed us!
"O magnify the LORD with me, And let us exalt His name together. I
sought the LORD and He answered me, And delivered me from all my
fears." Psalm 34:3,4

Love,

-Dann (for both Pam and I)