are listed NEWER to OLDER, meaning newer entries are on top,
older at the bottom. Depending on when you read the site last, you may
want to scroll down, find the entry you read last and read UP for a more
chronologically accurate update.
Update Thursday April 28, 2005
have a heavy heart. The preliminary analysis is that the cancer has
recurred. There appears to be little doubt that his lymphoma has
survived the transplant assault. The additional tests will determine
the details of the cancer - what protein markers are on the surface
and things like that.
went well. They removed the mass on the right flank
and did a spinal tap. The mass turned out to be about the size of a
lima bean and was curiously tucked between layers of muscle. The
surgeon said this is very unusual. It also accounts for the pain. I
am happy for it to be out. The spinal tap showed no signs of
involvement of cancer - which of course is good. Ryan was in a decent
amount of pain from the area where they removed the mass on his side.
The small puncture in his back gave him no pains but Ryan told us it
was wet when he was in the recovery room and sure enough it was
leaking spinal fluid. Very strange and disturbing. This has never
happened with Ryan and no one here at Duke had ever seen something
quite like it. We were certainly familiar through the many spinals
that Ryan has had over the last year and a half that he can not sit up
for ½ hour after the spinal is done or potentially suffer an
incredibly bad headache. Because Ryan was leaking spinal fluid from
his back for probably well over an hour instead of the ususal 1 to 2
minutes to extract fluid for a sample, he was required to lay flat on
his back for about 5 hours. Suffice it to say this did not please
I have absolutely
willed myself to capture each moment when I am in
Ryan's presence. I will have break downs but I don't have time or use
for them while I am with Ryan. Greg is doing the same although I know
the lump in his throat is hard to swallow.
We are meeting
with Dr. Martin on Friday to get a plan. I spoke with
him at some length today - more sort of a free flow of thoughts. I
have asked him to push himself to think outside the box. For the
immediate time, the immuno-suppressive drugs were essentially shut off
- sort of a last ditch effort to get new cells to go and attack the
cancerous ones. We have already found one new enlarged lymph node
behind Ryan's left ear. It's hard to inspect him these days because
he is so sick of being dissected and prodded - and if he is not
cooperative with the inspection, you can't find anything anyway. I
try to disguise an inspection with a massage.
One of the
first things medically that will likely be done is to give
any of the last dregs of the stem cells from his donor. They save a
small amount for control and testing but in this situation, they often
introduce those to see if they can mount an attack of their own. The
benefit of these cells is that they have not been immuno-suppressed at
all. The other side of the coin is that it also tempts a case of
graft versus host (life threatening and painful in its own rights).
Other ideas were bounced about to include spot radiation, low dose
chemotherapy and monoclonal antibodies.
it here safely at midnight. Ryan absolutely refused to
fall asleep until his beloved Uncle Chris arrived. He will be here
until this evening when his flight returns him to Pennsylvania. I
found myself almost dozing off on the couch next to Ryan as we waited
for Chris to arrive - Ryan nudged me and said, "Mom, you don't want
miss any fun, do you?" And indeed I do not so I sat straight up and
felt myself suddenly completely awake.
got here Ryan showed absolutely no signs of the more
reserved guy that he is with many people here. He first took Chris on
a tour to see anything that may be new to Chris since his last visit.
He was eager to make every second count - he wanted to play video
games, show Chris his pictures of Yu Gi Oh figures, do a French lesson
(Greg bought a French language kit sparked by Ryan's interest in the
language after learning a phrase from the movie Home Alone). And he
told Chris all about his surgery. He started by saying, "I got sleepy
medicine." And then followed up by explaining that he got his "owie"
taken out when he was asleep and it didn't hurt when they did it
because he was sleeping. He had Chris inspect the 2 spots where
bandaids covered his skin and then off they were giggling and playing
bombarded with Oxycodone (pretty hefty narcotic) to
limit his pain, Ryan's battery never slowed down. At 2:00 am, he
declared that it was boys time and he, Chris and Greg retired to his
room to do some more laughing, playing, tv watching and other boy
I am thankful
for having Ryan today.
continuing to walk this walk with us. I can imagine there
are plenty of heavy hearts out there with us.
April 27, 2005
April 27, 2005
day for Greg and me. Ryan's body is starting to show
more signs of lymphoma – specifically, bigger and more enlarged
nodes. Since so many of Ryan's relapses have involved the skin in the
form of a red bumpy skin rash (looks like chicken pox without fluid
inside each bump), you all probably think that is what we are seeing
now. It is not. Whatever is going on in his body is exhibited by
little balls inside his body. Some of the masses are clearly in the
lymph system. That is alarming because his cancer is lymphoma which
travels in the lymph system. It is how things got started originally
– his first symptom was an enlarged cervical (back of neck) lymph
node. And in an unbelievable short time, more and more lymphs started
popping up all over his body. It is the worse kind of de-ja-vu right
We are now
clinging to certain thoughts. First and foremost, we can
not change what goes on in Ryan's body. We can, however, control what
we do with our time. It has taken great strength and will, but we are
soaking him up. The biopsy and spinal tap is scheduled for tomorrow
so we still have no definitive answers.
the worry, we managed to share and have fun together. We
had a fierce light saber battle – reenacting the scene when Qui-Jon
and Obi Wan fought Darth Maul. We rewrote history because Ryan was
Darth Maul and he defeated both of us. He had x-rays today and I
showed him how you could see his tubies on the inside. I wasn't sure
he was too interested at the time but heard him recount in great
detail what he saw to our dear friend Michael on the phone. He amazed
Jayne at the clinic today when he played a Pokemon scratch off game –
we would make one swipe with the quarter to reveal one line of a
Pokemon character and Ryan would name it. Then we would scratch off
the area of the name – and of course he was right every time.
spent a couple hours combing the net for Yu Gi Oh figures.
Mrs. Dow's care packages have been a great resource for a reward for
many treasure hunts with lots of Yu Gi Oh figures and magnets. Every
day he tells me, "Mom, we forgot to do a treasure hunt." And
deal of the time, I start racking my brain about what kind of clues I
can create for a fun hunt. Sometimes he has to dance or touch his
toes and then take 10 steps down the hall and then into the room where
his tooth brush lives. I think his all time favorite has to be when a
clue led him to the bathroom where he was instructed to say all the
potty mouth words that are allowed to be said while you're in the
out a game from his Game Cube that would permit all 3 of us
to play. Joy oh Joy (note the sarcasm), I got to blow up buildings
and eat humans. Much to my dismay, Greg and he have guy time on the
late nights and watch a show clearly for adults only called Family
Guy. Tonight we were all up late and they were across the room
watching and I heard Ryan chuckling out loud several times –
especially delighted when one of the characters named Stewie smelled
most boys, is in awe of the male anatomy. Tonight while
Greg was next to him on the couch with the laptop on his legs, Ryan
became quite concerned about the computer getting too hot on him - and
making him have a "hot penis", as Ryan put it. We all got a
chuckle out of that. Ryan loves to sit on the couch with one leg all
twisted around the other and then calls himself a pretzel. I get the
imaginary salt and Greg gets the imaginary mustard and we start
feasting on his legs.
He is also
longing for home. He asked Greg when he will be able to go
home and let us know that he would like it to be soon. We join in his
to know how the doctors were going to take his "owie" out
of his body. He wants to know what method and tools will be used to
get underneath his skin. He has had several surgeries in the past but
now his understanding of procedures is getting more sophisticated.
When Lauren the nurse practitioner called in the morning, he told Greg
to tell her that he is still hurting. We have encouraged him to talk
to the doctors and nurses just like we do. I love when he takes us up
on it. His concern for other patients is also tender and sweet. When
we hear a baby cry, he imagines what is causing such grief and often
decides, "that poor baby is getting a pokie, mom". And he usually
follows up with, "but he'll be okay."
best buddy, visited us today. Ryan was glad she was
going to come tomorrow for his surgery. When she left, he told her to
wear her doctor clothes tomorrow. We're not sure what she'll come
dressed in or why he made the request, but I'm anxious to find out
Ryan is no
dummy and can sense we are off kilter. Without any
warning, when we got home from the long day of pictures (x-rays),
meetings, pre-op appointment, tour of the surgical unit, and platelet
transfusion, Ryan got very (atypically) upset. He started crying and
curled up on the couch. I tried to draw him out and learned that he
did not want to go to sleep tonight because he is scared of tomorrow.
I think at his age he thinks if he doesn't fall asleep then tomorrow
won't come. If only we could freeze time.
favorite person and Greg's brother, is going to fly in
tomorrow night to hang out all day Friday. For our planning purposes,
it ensures that Ryan will have a playmate if we need some time to hash
things out with the doctors and formulate new plans. If the cancer
has decided to return, we have no time to waste. We might be calling
upon you all to brainstorm ideas for us so please be ready for the
Update April 19, 2005 to April 26, 2005
April 26, 2005
I wish I
had updated yesterday when we were on top of the world. I
had started the update and meant to send it but I was having too much
fun giggling with Ryan. Yesterday he ate great, he was active, and he
was hilarious. That is not to suggest that today was doomsday but we
do feel like we were gut punched.
Ryan complained of some stomach pain and an examination
by us revealed a small bulbous mass on his right side. I immediately
suspected appendix. When Ryan was examined by the doctor, he ruled
that out fairly easily because the area was not deep enough and Ryan
wasn't sick enough. While checking all over and going over Ryan's
history of lymphoma with one of the doctors, Greg felt in the area
where Ryan's original cancerous enlarged cervical lymph node had been
removed for biopsy at the time of the original diagnosis.
Disturbingly, he discovered an enlarged cervical lymph node that was
quite small but clearly inflamed. Gulp. There is – maybe - a third
bump on his left breast bone but that could also as likely be a
hematoma due to the combination of low platelets and sleeping on the
clamp of his tubie.
to succumb to an early conclusion of the lymphoma returning,
but I must say that the doctors are clearly worried. If there was
only one bump, then their sights might not be on lymphoma. But with
evidence of a systemic issue and no fevers or other symptoms leading
to infection, lymphoma is a prime candidate. Ryan is scheduled for
surgery on Thursday to biopsy the mass on his side. They may not be
able to take a piece for initial testing if the sample is too small
but will stain the sample and get results within a couple days. By
the way, we have not re-done the DNA test yet – it's not scheduled
another 20 or 30 days from now (Darci, I know you wondered about it).
I asked today if we should do it now and it seems like he might run it
next week - but Dr. Martin thought that it might be misleading because
Ryan's lymphoma might avoid the blood and a result could be all donor
cells but have lymphoma. This doesn't make much sense to me but I'm
not able to sort that out at the present time.
Dr. Martin has had us skip the evening Cyclosporine dose
and to reduce the steroid dosage. Both of those drugs are given to
prevent graft versus host disease (when the new cells attack healthy
parts of your body) in an effort to stimulate the graft versus
lymphoma effect (when the new cells attack lymphoma cells). I'm still
on the side of the false alarm, but am very happy to be taking action.
Due to history, we are not the wait and see kind of parents.
Tuesday April 19, 2005 to Monday April 25, 2005
Days to 61 to 67
I don't want
the past week to get left out completely. It had a
couple minor bumps that made us a little worried but overall the week
was great. It was certainly a week we enjoyed being with Ryan and
thus a great week.
night (the 17th) there was a teeny amount of blood in
Ryan's urine – an immeasurable amount. His platelets were 11 on
Monday and since his parameters were reduced to 10, we waited it out
to see if his platelets could attempt a recovery on their own. By
Tuesday the blood was a little bit more with some very small painless
clots. By that point, his platelets were 8 so he had a transfusion of
½ unit. It was assumed that he would get a decent boost from those
platelets and we were told that his counts didn't need to be checked
on Wednesday. However, on Wednesday morning, he had a significant
amount of blood in his urine. We went to the clinic and discovered
that his platelets were 2! Either the bag was a dud or his platelets
were getting eaten up trying to patch the bleeding in his body. No
one will know for certain. They assume that the bleeding is being
caused by a virus called Polyoma in the bladder.
He got another
transfusion of platelets – this time a whole unit – on
both Wednesday and Thursday. His platelets held up over the weekend.
On Thursday Jamie (the physical therapist) came by and this time Ryan
set up an obstacle course before she got here. On Friday, Ryan's
friend and nurse Brooke came to visit. While he was a little shy, he
did seize an opportunity to jump up on her lap to explore some things
on the computer.
was a huge day – Riley, one of Ryan's buddies from home was
in the neighborhood (on their way to vacation) and stopped by for a
short visit. It was so awesome to see another kid in the room with
Ryan. As soon as they got here, Ryan unveiled to show his tubies and
that he was hooked up to an IV pump. Riley marched in and delivered a
huge present to Ryan but was puzzled when he first saw Ryan and had to
ask his dad where Ryan was. Probably due to still being hooked up to
an IV pump and not interacting with other kids much, their play
consisted mainly of Riley exploring Ryan's toys with Ryan supervising.
At one point, though, Ryan and Riley were both on the ground sorting
through Ryan's Pokemon and Riley gratuitously put his arm around Ryan.
So sweet. After they left, he walked up a (tiny) hill with the aid
of a railing but nothing else. It was quite a feat for his weak
little legs. Ryan and I captured a spider in his insect catcher and
watched it pace for a while. I was a little creeped out but Ryan
loved it. Sunday was lots of fun, too. Ryan was interested in going
on a treasure hunt and exploring for spiders and ants outside. Later
in the day he enjoyed a stroll ride with his best buddy Tori. And –
as mentioned – we had a great, GREAT Monday.
was the picture perfect day. Ryan was sweet and cooperative
with everyone we bumped into. At the clinic, Dr. Martin even talked
about giving us a pass for the weekend to go home in a couple weeks.
Ry was joking all day and playing lots of Star Wars legos with his
dad. He wanted to walk and even refused help when offered. He
watched Fragglerock at night and ate a ton of Chinese food. He ended
it by making shadow figures in the beam of a flash light in his room.
Definitely a sweet day.
And I do
not mean to suggest we wasted today with worry. Yes, we are
worried. But not enough to miss the day we have today. Right now
Greg is playing a Scooby Video game on Ryan's Game Boy while Ryan
listens in with headphones. Earlier I got shot in the kundangee with
foam bullets. He does not have constant pain right now. It is less
random and occurs only when we manipulate the bump.
10 pm and time for tortelli and corn – even reduced steroids
does wonders for the hunger.
close, I can't forget to mention some more of our own
Incredibles that continue to support us. I hope you all saw my add-on
at the end of the last update that talked about the bicycle built for
Ryan, the Walk to benefit the Family Support Program at Duke, and the
plea to get some of you to donate platelets. If you were tuned into
the bike auction, it was absolutely incredible. I was called
yesterday by one of the two people who run the Family Support Program
here (amazing that only 2 of them run the whole program) – and Wendy
Sall made a donation on Ryan's behalf – the woman here wanted to
up a team name in case she received more donations in honor of Ryan.
Ryan's Hope seemed fitting since that's the name of our Light the
Night Team (for the annual walk sponsored by and for the Leukemia and
Lymphoma Society). And we continue to get incredible support from
people far and wide. I am ever amazed at the kindness of others and
even more impressed that we are constantly being thought of and prayed
for. I was so touched to receive yet another special gift and card
from our dear old friends the Gallaghers – just another example
Ryan has garnered the love, care and concern from so many.
I know it
goes without saying but please keep us in your thoughts and
prayers. And of course include all those kids who suffer from cancer
and undergo all ranges of treatment every day.
April 6, 2005 to April 18, 2005
49 through 60
I never thought
I'd have another good night's sleep since Ryan's
relapse in October. At that time I felt like I let my guard down too
early from his original treatment and vowed not to make that mistake
again. Remarkably – only 60 days after Ry was transplanted, I return
to my heavy deep sleeping at night. Ahhhh.
When we first
got back to the apartment after Ry's discharge, I jumped
out of my skin every time Greg came into our room in the evening. I
go to bed on the early end so I can get up early for the morning IV
infusions and Greg stays up late (usually partying with Ry) and does
the late night IV stuff. Pre-transplant, I would often be trying to
doze off when Greg would bust open the door and say, "104
temperature." And I would reply groggily, "Did you give him
to which he would respond that he gave Tylenol 45 minutes ago when
his temp was 103.7. I would sit up as if I had not been asleep at all
and pick up the phone to page Dr. Martin. I realized last night when
Greg opened the door after I had retired to my bedroom but still awake
trying to squeeze in a chapter of my book - that I didn't jump out of
my skin. I don't know when it stopped – I tried to remember –
thankful that I couldn't.
I now understand
that it's not that I am repeating old mistakes of
letting my guard down but that I am allowing myself to appreciate the
good day. I'm all too aware that things could change tomorrow –
even in a minute. But I am calm and peaceful with the moment –
because the moment is good. I rest peacefully knowing that we have
done everything we can to beat this cancer and that if it is not
eliminated after all the potent damage we did to his old bone marrow,
then we have done all that is humanly possible. It's actually a
comforting feeling – it's the one that drives the "live in
When I was
driving home by myself from the morning blood drop, I
caught myself thinking: what a wonderful life we have. Funny – huh
when you boil it all down, you can clearly see what's most important.
Evan, Hominy and Papa visited. It was beyond fantastic.
Evan is hilarious – and destined to be a troublemaker. I cuddled
him in the morning and dipped him backwards (his favorite position is
upside down) throughout the day. A highlight of the weekend had to be
the walks we had with Greg, Evan, Ry and me. I had a glimpse into
what other families consider "normal." Something I ordinarily
only dream about. Check out the new pictures on the site and in one
you'll see the boys hanging out together in the community gazebo. To
a mom's eyes – it's priceless.
challenge came when Evan developed some sort of cold while
here. We really had to keep them separated. I felt so sad that I had
to chase Evan with a tissue in one hand and a Clorox wipe in the
other. Even sadder was Ryan's transformation. At first Ry continued
to try to cuddle and "pet" his brother but we had to emphasize
germ thing. Eventually, Ry took on his cause with a passion and
sounded the alarm bells like a vampire was after him when Evan would
try to play with him. We tried a mask on Evan but that of course
didn't last long on our oversized, fun-loving 15 month old who knows
only one speed: running.
past 10 or so days since the last update, Ry has continued to
do well. Not much change in his health. And we love it. We are
patiently waiting for his new marrow to learn how to produce cells on
its own. The next test to see if he is still all new donor cells (and
rid of all the diseased old cells) will not take place for another 30
or so days, but we hope and pray the new cells continue to fill his
entire body. His walking is getting slightly better – he is not
wobbling as much but still takes an occasional fall when walking short
distances. Greg and I are challenged in this department because we
feel bad for him when he has difficulty so we pick him up too often.
But we try our best to encourage walking by holding treasure hunts on
a regular basis that require Ryan to go from one end of the apartment
to the other several times to gather all the clues. By endurance, we
goodness for Jaime, the physical therapist. Her ideas to
get Ryan moving and working on his muscles are by far the most
creative and successful that I have seen. In fact, we have developed
quite an impressive support group while here. Tori, Ryan's "best
buddy", is fabulous and always makes time to visit at the clinic
at home. Her profession is to work with brain tumor patients – many
pediatric – and she has a knack at working with children.
Unfortunately, I have watched Ry develop another "side effect"
treatment that I would define as slightly anti-social – he is more
reserved with and wary of anyone – even if he sees them regularly
other than Greg and me. It means that his cute personality is hiding
from many of these fabulous people that we have met while here.
And the list
of fabulous people continues. We have regular contact
with some of Ry's nurses from the floor and have made plans to visit
together. Emily from Child Life continues to brighten our days when
we see her in the clinic. Michelle, a nurse practitioner, is
dedicated, warm and caring and I think we would be good friends in
other circumstances. There are so many great nurses at the clinic –
most notably Wendy who always has a funny story to tell Ry and makes
him giggle when she mashes her face against the glass wall. And I
have developed a deep admiration for our nurse coordinator, Jayne
Cash, who visits regularly for no reason other than to check on Ry and
visit with me. It goes without saying that I have the utmost regard
for Dr. Martin. In some way, I hope this tribute will remind me in
years to come of the wonderful people we came across while here at
do have a wonderful life.
are Ry's big day in the clinic because it's Dr. Martin's day.
His WBC is holding its own at 6.9 having had his last GCSF shot a week
ago. His platelets were low at 11 but the doc has lowered his
parameters to below 10 so we will let it go at least one more day
without a transfusion. We used to think 18 phenomenally low and now
he blows by that without a backward glance. The piticiae (not sure of
the spelling but it's little exploded blood vessels that leave
telltale little red dots on the skin) is getting much better. The
cause of it is low platelets and we have been pushing it since
lowering the parameters a couple weeks ago. The theory is that the
body will be encouraged to produce if it doesn't think it's getting
them for free. It's a good sign that at 11 it looks better because
his own platelets do a much better job than the transfused ones of
others – although we are eternally grateful for the ones selflessly
donated by others that have sustained him and will likely continue to
help him along the way.
received IVIGG (antibodies to help fight infections) and
Pentamidine (medicine to help prevent a certain type of pneumonia).
Other than that, fairly uneventful.
Built in Honor of Ryan:
Ryan's cause has captivated even more people – as
unbelievable as that may be. A big chunk of the west coast has joined
the fight in a big way. There are some folks whom I have never met
yet now share a bond who have undertaken a project on behalf of Ryan.
They are bicycle enthusiasts – the Lance Armstrong kind.
a bike in honor of Ryan and are raffling it off on e-bay.
They learned about Ryan through my high school friend, Chris
(Hatchett) O'Connell. Her husband is a big bicyclist. In his leisure
time he hangs out with other bicyclists – I'm not sure but perhaps
formal as a club – and as I understand it, they occasionally get
together and do long bike rides. They also build bikes for
competition amongst themselves. They enticed a group in another part
of the country to build a bike for a good cause. Their good cause is
is on e-bay for 5 more days. It's really amazing. Think
of the coordination and man hours they put into this labor of love.
Check it out:Link
to E-bay Listing
many of you have chosen to make us your good cause, I continue
to meet a gazillion – as worthy – causes in my travels. Let's
you're not into biking or a bigger scale cause catches your fancy. I
am convinced that part of my role in the grander scheme of things is
to inform those that tune in to Ryan's site and bring awareness to
other important causes – maybe one will grab you.
be a walk benefiting the family support group of the Duke
University Pediatric Bone Marrow Stem Cell Transplant Unit. This is
the group that brought many hours of special playtime for the kids:
BINGO once a week, CellMates once a week (activity during which only
patients are allowed), pizza on Thursday nights, the walking laps
incentives with the footprint charms, endless supply of coffee, paper
plates and laundry detergent, weekly parents meetings, and so much
On May 7,
2005, they are holding their yearly fundraiser called
Rainbow Heroes Walk. You can learn all about the event by going to
little platelets don't just jump into the bag on their own.
Real people walk into a blood center and sit down for an hour and give
a piece of themselves. They don't know who will get these platelets –
it's just a complete selfless, kind act that is a real true need in
cancer world. Platelets only have a shelf life of 3 days so each time
Ry gets a bag, I look at it and think – sometime in the last few
someone decided to take time out of their busy life and go to a blood
bank. I feel like our lives almost cross paths at that point. Red
blood cells are in desperate need as well. The supply is very short.
I know you all hear this all the time, but consider you or a loved one
needing blood but there's not enough. A life could be lost because of
this. And it costs you nothing. Just a little bit of time – precious
time – for a precious cause.
On the Horizon:
the Night. The annual Leukemia and Lymphoma Society will be
coming up fast. It's in October. It's the same fundraiser I
participated in last year and will do so again this year. We have
again put together a Ryan's Hope Team – spearheaded by Rick and
Fontanilla. We will keep you posted. We would love anyone of you to
join and certainly if not able to attend the event, support us.
Update on Friends:
of you have taken a great interest in Ryan's friends on the floor
as well. Please allow me to give a brief update.
much improved. She still has quite a way to go but is off
the machine that helps her breath – her lung is no longer flat –
fantastic news. She is experiencing bleeding from her kidneys which
is painful but they believe the doctors feel confident that Frannie
will able to conquer this problem. She got up 3 times yesterday and
even walked from her room to the hallway. A tremendous improvement
over the last couple weeks. Viesta is doing much better as well and
is contributing to Frannie's recovery by donating her own white blood
cells. Her husband had a diabetic attack which landed him in the
hospital but he is doing fine.
(transplanted the same week as Ryan) is still fighting
hard but having some serious setbacks. They are hoping to avoid
having a shunt put into his head to drain excess fluids but might be
necessary. He is scheduled for surgeries tomorrow for a tube to go
directly into his stomach for feeding and some other life saving
measures to try to prevent aspiration on his own mucus.
was discharged over a week ago and doing really well. Since
he was not discharged until he was over day 70 (maybe 80) post
transplant, he will be going home in a few weeks. I know they are
anxious and excited to resume their life at home.
doing smashingly. He has occasionally felt yucky but his
tests all show he is well on his way to full recovery.
As I mentioned,
we are forever indebted to all of you who have made
our life brighter and easier – through donations and cards and visits
and e-mails . . . . My Oma (Greg's mom) has pondered out loud how we
could possibly re-pay all of you. And there really is no way.
There's no way to even express to each individual what they have done
for us. From the warm meal from an old high school friend to the bake
sale held by current high school kids whom I've never met to our best
friends the Sochas who fit us in every day in their lives to the
Stafford detective who dedicated his personal race car to Ryan. But I
truly believe that it is repaid – if that's the right word or concept
– by passing it along down the line to others who may (sadly) walk
our footsteps. By educating others about pediatric cancer. By
exposing others to the need for help for the individuals, small
support programs and big fundraisers. By raking someone else's lawn
when I hear of a problem in their family. By making food (if they
would dare eat what I've made) or giving a financial donation when I
So this has
turned into a little tribute to you all. Thanks again.
March 29 to April 5, 2005
41, 42, 43, 44, 45, 46, 47, 48
We are half
way. It's a time of reflection - and a time of great
anticipation - and a time sprinkled with moments of worry creeping in
(and let's be honest - sometimes sheer terror). To think only 50 days
ago, Ryan was still battling cancer that had once again returned to
ravage his body - requiring several types of chemotherapy, horse
serum, and more radiation exposure than the Chernobyl victims in a
last ditch effort to save him. And right now, he has brand new cells
- he's cancer-free and thus far having escaped major complications.
It's mind boggling.
this week was for the most part unremarkable. That's
good in medical terms. His clinic visits have been routine and he has
needed little else than platelets, magnesium, and the regularly
scheduled medicines. Again, yesterday they reduced his dosage for
Solu-Medrol and Cyclosporine (drugs to suppress immune system and
prevent Graft vs. Host disease). And making it an even bigger day -
Ry was taken off GCSF, the drug to stimulate the growth of white blood
cells. It is expected that he will need a dose every few days. And
the biggest news of the day: he will not have to go to clinic every
day!!! The schedule is Monday, Wednesday, Friday and only on the off
days for transfusions or infusions as necessary.
challenge currently is his muscle weakness and difficulty
in walking. We are not ones to sit by and watch a problem, so we
enlisted the help of a physical therapist. Fortunately, she was
willing to adapt her program to our little guy and used his likes to
her advantage. I warned her before her arrival that she might want to
brush up on her Star Wars, and she took the clue and ran with it.
Ryan is actually shy at first meeting and it was clear that he liked
her when he took her to show her his room. She, too, recognized the
profound weakness in his muscles and is planning to come two to three
times a week.
I have felt
a new emotion this past week. Guilt. Guilt that he is
doing so well and others are not. Guilt that he has two caring
involved parents and an enormous fan club from coast to coast - and
even some overseas - while others are barely scraping by. We are
blessed. We are lucky - that is, for being unlucky people. Because
of Ry's cancer, I am a better person and have more rewards than most -
And yet I would trade it all for the promise of good health for Ryan
until a ripe old age.
to be painfully mindful of his delicate condition as we
see some of the other brave kids succumb to the pitfalls of
transplant. A sweet child named Kerry passed away today from the bone
marrow stem cell transplant unit. The disturbing part from a parent
perspective is that she was doing well - no major issues. I remember
talking to her one day in the playroom and could immediately see her
sweet, sensitive spirit. She was distressed that she thought she may
have broken the computer when she simply didn't know how to return to
the home page. She made a friend on the hall with another girl,
Brianna, and they would do their laps together every day. I know
Brianna's folks are heart broken at having to explain Kerry's untimely
death to their daughter.
And our friend
Frannie continues to struggle each and every day. She
has had many setbacks but continues to rebound. Her liver and kidneys
have improved but one of her lungs has flattened and her heart is
surrounded by fluids. Her mom had surgery today to get a line placed
(that's a tubie for you educated by Ryan's experience) so that she
could have her white cells donated to Frannie in hopes of getting
Frannie back on track.
his first haircut today with Hominy and Papa - they tell us
it was a 2 lollipop haircut - not exactly a major life event but fun
nonetheless. I know they have their hands full - but from our view,
he is in the best hands in the world. They plan to visit at the end
of the week now that everyone is finally healthy up there. I can't
wait to squeeze his chubby body - he is in the 95th percentile in
height and weight. And thanks to the brilliance of Papa, Evan's last
chicken pox vaccine was postponed so as not to expose Ry to an active
A huge thanks
to all of those still sending us messages - they
brighten each day. And an even bigger thank you for the gift cards
and other very generous contributions to our cause. Ryan's face
lights up with the gift cards - and he has even been known to sleep
with one clutched in his hands.
to Joe Schneider - we are so honored to have you and your
wife use Ryan as an inspiration for your triathalon training and race.
To those of you not acquainted with Joe, he is himself a cancer
survivor. Joe, you are yourself an inspiration.
are quite busy here in North Carolina. It's a different kind of
busy. Our clocks are set on late evening Vorconazole infusions and
Acyclovir, Amlodopine, and other oral med doses throughout the day.
We also work hard to incorporate music, the arts, crafts, school,
exercise and good full fattening food into Ryan's life. It takes a
good deal of teamwork and I feel proud of us when I finally tuck
myself into bed. And on that note, at midnight, I am going to go do
March 25 to March 28, 2005:
brings great new beginnings for us Holts.
March 25, 2005
at the clinic. It was like one long playdate. Chris, Greg,
and Ryan made up an entire comic book series "To Da Max Team"
clinic - full of super heroes like Lava Boy, Hardshell, Beach Head,
Breezy and Surfer Girl.
magnesium and platelets. His blood tests all look good
other than the low magnesium. It's impossible to describe how many
things they look for on a daily basis that could be out of wack - and
are for many transplant patients - so we are truly fortunate right now
that his body is holding up so well. The really important stuff, like
his kidney and liver functions are all okay. Some of the liver
numbers are high but nothing alarming.
crab - now re-named Parisect after a Pokemon that looks
like a crab - is providing great entertainment for Ry. At one point,
we were watching Parisect climb up the grate in his cage and it
started teetering as if it might fall over with his weight. I told Ry
that I was worried he might get hurt and that he should be wearing a
helmet (always trying to influence good behavior), at which point Ryan
reminded me, "Mom, he has a hard shell, remember - he'll be fine."
And so it was I that was taught the lesson of the day.
for Pokemon led him on a long trek up and down our
little hall. Chris and Angie know him better than anyone other than
Greg and I - and yet they were amazed at the drive he has to be
rewarded one little Pokemon. I'm still thankful that we have such a
powerful incentive and that he can find such great enjoyment in
something - but he will not stop even when he is exhausted. We had to
institute certain limits unless we wanted him to collapse on the
floor. I loved Angie's observation - his determination and drive for
Pokemon figures is the same phenomenon that fuels him to beat cancer.
March 26, 2005
It was a
chicks day today at the clinic. Angie and I did our best to
fill the boys shoes. It was pretty low key - Ry only needed
magnesium. Try as he might, he can't hold onto it. He is given 1200
mg as a supplement in pill form every day - the recommended dosage for
a 4 year old is like 150 mg per day. His body is just not retaining
it. The likely culprit is the cyclosporine because it causes the
kidney to leak and magnesium is stored in the kidney. Again, in the
whole scheme of things - a side effect you would order from the menu
of side effects.
buddy Tori came over bearing Easter gifts. He was on the
verge of a nap but awoke asking to watch the new Pokemon movie that
Tori had packed in the Easter basket. Ryan is currently enamored with
glow sticks - not to outdo his Pokemon, of course, but he's enjoying
lightsaber battles at night with the whole gang. He assigns each of
us a certain color and off go the lights in the whole apartment. I'm
sure some neighbors must think we are conducting some weird
struggling. And it is taking a tremendous toll on her mom.
You can follow her progress at
I ache with every fiber in
my being when I read her journal - and hate that I can't make the pain
go away for either of them. Please keep them in your thoughts and
March 27, 2005
When the year started, I couldn't have dreamed we would
enjoy this holiday to the extent we have. First and foremost, we had
family here. We cooked all day and ate all evening. And we loved
that the rest of our family - Greg's side, my side and of course
little Evan as the link - all got together in Virginia. We were able
to hook up with them via web cam. Apparently Alexis was the most
excited, waving furiously at the camera!
egg hunt was a huge success. After Ryan gathered his loot
- from the egg on the lampshape to the one inside Parisect's cage, he
commented that, "This is better than Halloween - you don't have to
knock on doors!"
were off to the clinic - required daily until at least day
45. Ryan is still having a hard time holding onto magnesium so he got
another infusion of magnesium along with platelets and Vorconozole.
We're adding Vorconozole as an IV med at home because Ry was throwing
up the oral form and starting to rebel against all his oral meds
because of that one.
a monster nap and then played into the wee hours. When I
tucked myself into bed, Chris, Greg and Ryan were left to giggle and
do boy things.
March 28, 2005
and Angie had to return to Pennsylvania today. I
promised them I could find them jobs here if they stayed, but they
opted to return to their own home and their current jobs.
Chris played until the last possible minute - on the computer
playing a Kids Next Door game until the bitter end. Then it was off
to the clinic. Ryan's blood tests results are considered really good
at this stage in the game. Phosphorous and magnesium low and some of
the liver function tests are off kilter but the rest is looking
terrific. A study was done to see if he is yet producing his own red
blood cells and it looks like he is not doing that too much on his own
yet - not something they are overly concerned about at this point. He
is still platelet dependent but now skips every other day - progress
comes in small packages.
day at the clinic because Monday's is IVIG day - a blood
bi-product that is given every Monday to help boost his immune system
- some of you may remember that he received this periodically in
Virginia. It's about a 3 hour infusion.
We were thrilled
that his steroids, cyclosporine and blood pressure
medicines were reduced in dosage. We haven't gotten rid of any of the
oral or IV meds yet, but just another little step in the right
direction. As much as I appreciate what cyclosporine does for Ryan, I
look forward to the day it is gone and his cheeks can deflate.
the night with a good Teen Titan battle. Another great day.
March 20 – 24, 2005
Latest: Ry was discharged to out-patient this week!!!!!
March 20, 2005
given another day pass. He counts down the minutes to
release - and was so anxious to get out of the hospital that he had
attempted to wear his shoes to bed the night before!
times a day for the last couple weeks, at our request, Ryan
has politely turned his hands over for a thorough inspection of his
palms – while we hope with all our might that we might see the
splotchy rash indicating the growth of new donor cells. And when we
see it, we say, "Hello, new cells." Today, on the way to the
apartment, Greg and I were talking about his new cells growing. I
looked in the back seat and caught Ryan carefully studying his hands.
We love our new donor cells.
We are still
on target for release this Tuesday. We're cautiously optimistic.
March 21, 2005
out on his last pass before tomorrow's discharge. I've
tried to recruit several of the nurses to stay overnight with us on
our first night home but no one seemed interested??? I've had all my
instructions on homecare, and if truth be told, I think we are getting
off fairly easy because of Ryan's ability to eat and drink on his own.
He was taken off TPN (nutrition fed through IV) which makes our home
medicines significantly easier.
liver is still in distress but there is some medicine
available for her that is very promising. Please direct lots of good
thoughts and prayers to her and her mom, Viesta.
We have had
unbelievably excellent care here with the nursing staff
and will miss them tremendously. They not only take good medical care
of Ryan, but have become our friends. THANK YOU - Brooke, Jenn,
Kitty, Donna, Erika, Shawn, Melody, Andre – and so many more. Luckily
for us, both Brooke & Jenn were working tonight so we were spoiled.
The highlight was the bicycle race between Ry, Brooke and Jenn. Of
course, Ryan kicked their kundangees.
March 22, 2005
RY WAS SPRUNG
After a frenzy
of taking down wall coverings and packing up stuff,
Ryan walked out – one hand in Greg's and the other in mine –
The unit has a tradition of throwing a confetti parade that the
patient walks through while the hospital staff, patients and families
pummel the one leaving with confetti. I had attended several before
and dreamed of the day Ryan would be showered with confetti. Ryan's
new life has begun.
of certain high risks associated with patients during the time
after transplant, Ryan is expected to stay here in Durham until at
least until Day 100. Day 100 is a landmark that was sort-of randomly
selected but corresponds to when most of the serious complication
risks are over.
March 23, 2005
first night was fantastic! It was hectic but glorious.
made our way into the Clinic in the early afternoon. It
was a very short visit – which was a pleasant surprise. Ryan did
need any platelets despite getting them every day in the hospital.
is putting up a fight but in a dangerous position with
her liver. The next few days are very important. Please keep her in
your thoughts and prayers along with all the 5200 kids.
March 24, 2005
longer visit at the clinic because Ry needed platelets. It
was so nice to see several of the patients and their families who were
prior to Ry.
- Chris and Angie arrived today!!! We celebrated by
smashing open an Easter Egg piñata (courtesy of the Hewitts) and
grilling out. Ryan was attached to Chris and Angie – sitting on
of one or the other virtually the whole evening.
brave Landon passed away. His entire extended family had
been holding vigil in his room for several days. It doesn't get any
easier even when you have time to prepare.
are constantly reminded of how lucky we truly are.
16, 17, 18, 19, 2005:
The test detected ALL donor cells
and NO recipient (Ryan's old) cells!!!!!!!!!
could not be better. He has passed the first big test
with flying colors. The test is repeated at certain intervals because
his old cells may still grow. As Dr. Martin put it, he does not trust
Ryan's lymphoma because of how aggressive and resilient it has been -
He advised that the six month DNA test will be the really telling one.
CELEBRATE the unbelievably fantastic news!!
to the nurse telling us that Ryan could have a two hour pass
today!! I was a little skeptical about the pass - there is absolutely
nothing to do but go to the apartment - except for maybe going through
a carwash. I wasn't sure it seemed too exciting - But I was
delighted to see Ryan so excited. His request: walk down the hall to
we got in the car, I realized how caged up he must have felt the
last 30 plus days. He was looking out the window - head moving back
and forth - like he had never seen a tree or moving cars before. He
had little time to do anything but walk down the hall to his bedroom -
of course - and collapse on the couch for a quick nap. But he enjoyed
every last second.
very well medically, Ry was given a 4 hour pass today.
Perhaps his only regret is not being around the nurses to pinch those
who forgot to wear green - Happy St. Patrick's Day! Again, we made
our way to the apartment and Ryan explored all the nooks and crannies
of the apartment - discovering his old stuff as if it were new.
telltale transplant signs - like the smell of chemicals
coming out of Ry's pores - remind me that he is not a normal everyday
kid while we are out on pass. Another sign that is more subtle to
those around him every day is his really pudgy face. Because of some
of the medicines, Ry's face is getting puffy and distorted. We've
watched it slowly balloon so it's not so strange to us, but I realized
today that his face is almost becoming unrecognizable as the guy who
checked into the hospital. It should all go down over time when the
medicines are weaned, but for now, I have some nice round cherub
cheeks to squeeze and kiss.
Most of our
friends are hanging in there on 5200. Frannie still needs
some extra well wishes and prayers to keep her cells growing - the
more they flourish, the better her organs can heal. Right now they
are in distress but her cells started to creep up so there is great
hope that she will pull through soon. Our other friend - I call him
big Bryce - is doing very well with his cells coming in. And Ryan is
in love with his mom's cooking. I guess I should be offended - but
I'm not. I love that he loves her food - plus I'll take home a few of
the simple recipes and do my best to imitate them. Little Bryce is
still in the PICU but improving. Very good news for a boy on the hall
named Terrance. Just two weeks ago, he was on dialysis and not
expected to make it many more days, but has made a remarkable
turn-around. He now walks the halls and is on the discharge list for
hour pass today.
and the Beauty.
First thing in the morning, Greg noticed some unusual bumps on Ry's
upper chest. GULP. The Beast - is it back? - was the first
horrifying question in our heads. We were both out of sorts for the
remainder of the day. We went out on pass and tried our very best to
put on a smile for Ryan and erase the worry while we were home
enjoying the time off the floor. Today was the day the DNA test
results were due back and now we were feeling scared. When we
returned, we passed Dr. Martin on his way out - when he revealed the
Beauty! ALL DONOR CELLS. I almost could not believe it. I walked
around the next several hours holding the piece of paper marking the
results - I understood maybe 1/10 of the medical jargon on the sheet,
but nothing was going to get it out of the clutches of my hands. We
laughed, we cried, we celebrated.
testament to the beauty of humankind:
We received a beautiful picture of three high school students in the
mail - along with a very generous check of $527 earned at a bake sale
in Ryan's honor. And here's the story: a high school girl learned
about Ryan's plight from her mother. She was so taken by the boy's
situation, that she recruited a couple of her friends to sit outside
on a cold (and looks like maybe a little rainy) day to sell baked
goods to help this boy. She and her friends could have done what most
kids their age are doing: sleep in on the weekends, go to the mall or
movies, laze around the house until dinner is made, play a video game,
and talk on the phone for a couple hours. Instead, they made a ton of
food, brought awareness to childhood cancer and earned money to help
my Ryan. Completely amazing. Thank you, Jessica Pence, Chandace, and
Joey. You are three very remarkable and amazing people.
keeping an eye on the bumps which appear to be flat and
therefore different than his usual cancer rash - And still riding high
from the great DNA results.
got a 4 hour pass. Before leaving, he had fun joking around
with Jenn, Donna and Kitty - most of the talk involving pongus and
burps!! But when it got time to go, he was very anxious - putting on
the filtered mask a good half hour before we could leave. And then we
sat in the hallway stalking the doctor so Ry could be examined and
cleared for the outing.
escape was underway for the day! He ate, played and again
enjoyed the apartment. He was hoping that the new Pokemon shipment
from the e-bay order would arrive so he could cash in his Pokeball
money. And like the good servant, I checked the mail for King Ryan -
like 3 times during the day but the mail had not arrived (we knew Papa
had shipped a few and there was a good chance they would arrive).
Unfortunately, it was time to leave to return to the hospital - having
had fun but empty handed. And then when we were pulling out, we
noticed the mail truck at the mail boxes. I jumped out and convinced
the mail carrier to look for our special package. She very kindly
took to my cause and retrieved the one big envelope that was destined
for our mailbox. It was the package. Unbeknownst to me, Ry was
calling out my name in the car. Greg told him to relax - at which
point, Ry said out loud to himself, "Ryan, take a deep breath."
was - as expected - absolutely elated to get a new little guy - who
was it, Bayleaf?
that's good for the soul: we received a note from a
woman who graduated two years after me in high school. Her daughter,
Natalie, just turned six and got some money for her birthday - and
guess what she wanted to do with it? You guessed it - give it to the
boy Ryan who is fighting cancer. Wow - at the tender age of 6 -
already committing random acts of kindness.
contrast, I went to sleep with a heavy heart because Landon,
the 15 year old boy in 5201, is not expected to make it through the
night. He had recent struggles because of liver problems, but he was
improving and walking the halls just 4 days ago. I thought he was
looking so much better and was so happy to see his mom beaming next to
him. But things have taken a turn for the worse and all of his organs
are struggling. It's just not right.
kids as often as they'll allow.
March 12, 13, 14, 15, 2005
March 15th marked the third day above 500 ANC which is
the landmark for engraftment. Blood was drawn on March 14th to do DNA
testing which will determine whether the donor cells are the ones that
have grown. The earliest results will be back will be Friday.
March 12, 2005
good day. The only medical issue is elevated blood
pressure. We had the dynamic duo for nurses - two of our favorites -
Brooke during the day shift and Jen for the night shift. They are
both in the recently posted pictures on this site.
is slightly shifted - His motor really doesn't get
started until the afternoon and he usually gears up in the evening.
At about 10 pm, he was in the hallway playing basketball and dancing
to The Black Eyed Peas with the nurses.
a nice visit by Jackie - Ryan's old child care provider -
and currently watches Evan a couple days a week. She is our personal
mail deliverer and dedicated cheerleader.
enjoy all your good wishes, prayers, cheers and support -
and I'd like to trespass upon you a little more to ask you to extend
the same to another child here.
- one of the kids who was transplanted the same week as
Ryan - is struggling. He had gone to the PICU and come back. A few
days after he returned to 5200, he had a major setback and hemorrhaged
in his brain. He is currently in the PICU and fighting for his little
life. His father asked me personally to pray for him and I am passing
along that request.
March 13, 2005
OVER 500 ANC. Brief lesson on what that means: once the
child's body is depleted of its cells: white, red, and platelets, the
new donor cells are transplanted or infused. The body is supported
for platelets and red blood cells by transfusions - donated by
complete strangers for most kids - and in Ryan's case, directed donors
give the red cells but platelets are from the same pool of anonymous
kind souls. The white blood cells need to produce on their own -
although they are encouraged by a drug that stimulates their growth.
When the white blood cells reach a certain level, they can be measured
with a calculation to get an ANC. An ANC over 500 indicates a
functioning (although very weak and crippled) immune system. After
three consecutive days over 500, the patient is deemed to be engrafted
and the date of engraftment is related back to the first day of over
If Ry is
over 500 for 2 more days, today would be the date of engraftment.
our sweet buddy and first friend since we got here, had her
family visit this weekend. They are a lively fun bunch. Poor little
Frannie wasn't feeling well - and even more sad - she doesn't want
anyone to see her without her hair. She honestly looks beautiful
without it, but it can be a very difficult adjustment for kids -
especially girls. Our society puts so much emphasis on hair. It's a
shame because it is actually the best side effect of all of them - it
doesn't hurt you, it doesn't affect your vital organs, and it grows
back. I remember it was difficult for me when Ry first lost his hair
because then he looked sick. But since he was a 3 year old boy at the
time, he really didn't care much. And now I wish all side effects
were so benign.
Frannie's sisters, Jessee and Sheba - and they were vying
for Ry's attention as well. Ryan shared some of his morphers and they
played power rangers in the hall. And the girls got the biggest kick
out of Ryan's song. They must have asked me to play it in the family
room 30 times. By the end, they had nearly memorized the lyrics and
had a few moves to go along with the tune.
me to dedicate a small tribute to another 5200 warrior
who passed today. Deondra had been fighting for some time - I had
mentioned her about 3 weeks ago as the young lady who walked out of
the hospital after being discharged post transplant the day after we
arrived only to return less than a week later with lung problems. She
fought bravely with her mother relentlessly by her side. I am only
grateful that she is no longer suffering.
We are ever
grateful and blessed to have Ryan thriving and enjoying
the day. He had another late night basketball game with Oggie - maybe
March Madness is contagious.
Monday March 14, 2005
Day 2 over
500 - and a nice boost in the numbers. Please, please,
please let these be the donor cells.
his usual low-key day followed by a rowdy evening. I
also enjoyed many tender moments with him - and I got several
"pat-pats" as I call them (hugs during which he gently pats
with his little four year old arm and hand).
to push himself to do as many laps as his legs and energy
will allow. And really the only reason he continues to push is for
these small goofy little Pokemon creatures. So what.
Tuesday March 15, 2005
engraftment was on Day 25 - March 13 - today was Day 3
of over 500 ANC. The ANC did go down, but the drop is not considered
for Ry is that he no longer has to wear masks in the hallway
- since the whole unit is Hepa-filtered, Dr. Martin allows this
privilege here on the halls of 5200. It is a totally different story
off the floor. In fact, off this floor and in the general public, he
will be required to wear a filtered mask for 9 to 12 months post
transplant. He is at greatest risk of all the transplant populations
having had an unrelated donor match. If you get your own cells
(autologous), you have these restrictions for 3 months; if you have a
sibling or related match, the length of time increases to 6 months -
but for those in Ryan's category, you are the most fragile and
vulnerable so the time is the greatest.
some of these things in the discharge meeting I attended
today. Yes, they are putting us on the launch pad for possible
discharge next week. I am excited - and scared to death. They start
preparing you for discharge as early as possible. And everything - as
I've said before - can change in a moment's notice. I'm mindful of a
child who was scheduled to leave the next day and ended up staying
many more months due to the sudden onset of an infection.
I was also
instructed that Ry is not allowed to go to the movies, the
grocery store, restaurants, or any other place where a human being may
be spotted - until otherwise instructed. I understand that this is
the rule for many months post an unrelated donor transplant. He also
will have a very strange and restricted diet for one year which he has
been on since his transplant and whenever he has been neutropenic in
prior treatment. No fresh fruit or vegetables - sounds bizarre, huh.
But these items harbor certain food bourne illnesses and bacteria -
and are avoided also because of how they are kept in the store where
lots of hands touch them. He is also not allowed to have any deli
meat, cheese or baked goods. If we get fast food, they have to make
it right when we order it and he has to eat it within one hour. All
food needs to be consumed within about an hour after it is prepared
unless it is kept refrigerated - but not in a refrigerator that others
use. Crazy but worth it to prevent something that could actually take
his life or wreak havoc in his body.
Once we are
cut loose from the hospital, the expectations for the
caregivers are daunting and enormous. There will be around the clock
intravenous medicines to be administered by various types of pumps,
oral meds with which to torture him, drawing of blood labs, delivering
blood vials in the early morning hours, visiting the clinic (day
hospital) EVERY day for basically the whole day and having to pack our
lunch, snack, dinner along with Ry's crazy diet food and entertainment
for the day including pokemon figures, movies, games, crafts and
things to learn with - like books and computer games - along with
extra clothes for Ry and some of the meds. Each and every day. Then
at the end of a long day at the clinic, return home to make some food
for the next day, do all the day's chores and tasks, and start up all
the meds again.
I want to
be on the part-time plan - play during the day with Ry and
check into the hospital for the nurses to cover all the medical needs
at night. Either that, or maybe we could borrow one of the nurses to
stay with us. How do you think I can sign up for that plan?
Ry had some
really cool visitors today. A few members of the Duke
basketball team came on the floor to say hello to the kids. We had
fun with their visit - although they now know the true identity of the
red power ranger - hope they can keep a secret. I, of course, have
picked them to go all the way in the tournament.
request: extra good thoughts and prayers directed to our
sweet, dear friend Frannie. She is really having a rough time. She
continues to have very high fevers of 104+ and she feels rotten. They
are investigating to determine if there is some damage to vital organs
or some internal bleeding. Please, please join me in begging a speedy
recovery for her. Her spirit is so bright and contagious - we need
her beautiful smile back.
keep the good thoughts and prayers coming for Ry to
continue on his path and to grow ALL DONOR cells. We will continue to
do our best to fill his life with happiness and laughter.
March 8, 9, 10, 11, 2005
March 8, 2005
up - .5 with the white cells! Still a small jump but
anytime you're going up, it's a good thing.
therapist brought a bicycle for Ryan that fits his size
perfectly. He is still unable to put weight on his leg but - of
course - needs to keep up his strength. The bike is the perfect
his insatiable appetite for Pokemon, he rode the bike up
and down the halls - and up and down the halls - for 20 laps! Only
stopping in between rounds because - as he put it - "I need to
March 9, 2005
and more laps - and the motivation - still Pokemon!! We
thought we received a big shipment but they're going fast. When will
his hunger for the little creatures subside??? And if truth be told -
I'm glad he has something to take him to another place. And I'm
tremendously grateful that there is something to motivate him when
nothing else will work - and we have been complimented on our creative
Ry was feeling
a little lethargic but all the things they monitor look
good. They say that making new cells is hard work and often the kids
feel kinda drab. He was pretty lovey with me which is fantastic - I
love snuggling. One of my favorite things is when we hug and he wraps
his little arm around my back and pats my back.
real damper on the day occurred around dinner time when I met
up with Stephen's mom in the kitchen on 5200. She looked wiped and
explained to me while she was inhaling some food that Stephen was
moved to the PICU. It was his 25th birthday. He has been battling
aplastic anemia for 10 years - since age 15 - and he got a transplant
last year. He returned to the hospital with complications. He has
two devoted parents that are lovely. And a beautiful sister who is
getting married in about a month. It made me sick to my stomach to
think he went to the ICU on his birthday. When I left the hospital, I
stopped by the store and got Stephen a birthday gift - and in my card
I assured him that he would spend many more birthdays out of the
hospital - and that he would be back on the golf course before he knew
March 10, 2005
You can only
imagine my sadness when I heard in the morning from Greg
that Stephen had passed away. I was devastated for his family - a
family I would probably never lay eyes on again. They had packed up
his belongings and left the hospital before I arrived. And on my way
to the hospital, I stopped by the store to pick a few things up - but
I couldn't return his gift. I'm sure one day I'll find a good home
for those golf balls and golf glove. And I'm sure Stephen is already
on the golf course again.
contrast, I was happy to see that Ryan is progressing - at
.7. When I got there, I gave him an extra hard squeeze. How lucky we
are - for today he is well and happy. I smiled a little bigger and
laughed a little harder all day long.
March 11, 2005
bump in his WBC - but the real watch has shifted to the
ANC. Finally he has an ANC - and it's getting close to the magic 500.
Once his ANC is 500 for 3 days straight, he has officially engrafted
- the mark of cells coming in to stay. It will not be for a little
later that they test to make sure the cells are the donor (new) cells
and not his old ones. The good signs to suggest these are the donor
cells are that he has had some of the classic symptoms from a reaction
to new cells. You do not have any adverse reaction to your own cells,
but some of the common reactions to donor cells are a rash on the
hands, running a higher temperature, having a flushed face or rash on
the head, and having general achiness. Ryan has experienced these
of Pokemon so I had to create a distraction. Ry wanted to
do laps for Pokemon. I made some Pokeballs out of construction paper
and called it Pokemon money. When he does laps, he can collect a
Pokeball and cash it in once the Pokemon arrive. Desperate times call
for desperate measures. So far it's working.
crimp in the day was some stomach pain requiring morphine.
Otherwise, he was loving and sweet - especially with his dad. It
makes my heart melt to watch them laugh and giggle with each other.
They spent about 2 ½ hours with Ry sitting on Greg's lap in front
the computer listening to Dora and Backyardigan songs. They were both
singing, dancing in their seats, and sharing some laughs over the
I spoke to
Dr. Horn this week. Those of you who have been on this
journey with us for a while know her as Ryan's doctor in Virginia. It
was so great to hear her voice - and also that of fabulous Margy who
covers the playtime and helps kids through rough times at the office.
Anyway, at one point, Dr. Horn commented that she admired how I was
handling things. The secret . . . get your pens out -
1. Have the
most incredible network of support from coast to coast and beyond:
- a spouse
who contributes equal or greater to the well being of the family,
- in-laws who are willing to sacrifice everything each and every day
to take over the primary care of child #2 - sweet Evan,
- sisters, brother, in-laws, and friends who do anything from laundry
to flying here from Utah to provide moral and physical support; or
making a special trip while nearby to deliver our mail; or maintaining
our website despite having a brand new baby, a set of one year old
twins and a very active 4 year old,
- a job that moves mountains to make sure you can be at the critical
care of your child and I'm talking from the top with the most
compassionate boss to the whole staff of attorneys, support staff, and
sheriff's office who have done several fund-raisers to help us cover
medical expenses and get us through the long stay here (a big benefit
w/ raffles; a bingo night; T-shirts; a concert)
- spouse's job community that came out in numbers since the beginning
and individuals gave of their own leave - and still remembered the fun
side by contributing toy "power" gift cards,
- more financial support that is covering the expected lodging and
living expenses while we're here to include a friend living overseas
whom we haven't seen since school in Richmond 10 years ago and donated
an entire month's living expenses - and not to forget the donations of
gift cards and others from $5 to $500 - each and every dime is one
that you could have used on your children - and I am overwhelmed by it
- countless folks who give of their own body - their blood - for Ryan,
- friends from high school, friends of our parents, friends from the
doctor's office, friends of friends, and strangers coming out of the
wood work to send words of encouragement and care packages - as far
away as Texas from one of my high school friend's older sister, and
2. Have a
son who is handling a transplant incredibly well thus far
(a procedure that is one of the most devastating procedures to the
body and has a high percentage of actually taking the life).
trick - there you have it. I owe it all to you and the RyGuy.
March 4, 2005 to March 7, 2005
are holding steady - What's that expression? Slow and
steady wins the race - We're embracing that saying. Although I'm
greedy and would love for the numbers to climb faster, everything is
on track. Ry's counts went from .3 to .4 and back down to .3 for the
last 2 days.
March 4, 2005
A very good
day. Filled with laughter, fun, and well - Pokemon. It
was a fairly active day doing laps and dancing on the bed to Beyonce.
The highlight of the day was a light saber battle held in the hallway
that brought back fond memories of days at home in Virginia.
we ache for Virginia. It goes without saying that we wish
we were closer to our incredible support system. It goes without
saying that we long to hold Evan every night before he goes to bed.
He is thriving and enjoying life - actually uttering his first words:
book, eat, cat. We see him on a regular basis via webcam and are so
happy for that.
is not being a part of everyone's life and not being
able to be there for family and friends who are going through tough
times. Allow me to call upon you to add some other family members to
your good thoughts and prayers: Mrs. Harju (my sister Lisa's
mother-in-law) was recently diagnosed with advanced cancer and is
giving it her all while she is in treatment, and Patty (my sister
Amy's sister-in-law) was also diagnosed with late stage cancer and is
keeping her chin up as she undergoes dialysis and chemotherapy. My
sister Lisa is having her last surgery to reconstruct her breasts
after surgery, chemo and radiation for breast cancer She will be out
of commission for six weeks. I desperately wish there was something I
could do and am hoping she can enjoy some of my support network.
March 5, 2005
Ry was basically
glued to me today. At points I thought our cheeks
would fuse together - and I was eating it up. We had fun - as siamese
twins - with visitors. Ry was doing laps for Yu Gi Oh figures - just
keeping us on our toes.
In the late
night, he was literally cracking up the nurses with his
funny sayings and love of funky music. When he has to go to the
bathroom, he'll call out: "Urinate over here." If only I could
is fairly decent - which would make his hominy very happy.
March 6, 2005
the number of white cells decreased, but we're still on
target. The doctors are very pleased with Ryan's progress. His blood
pressure is often high as is true for most kids on this floor. Thus
far - and hopefully forever - he has had relatively minor
One of the
kids in the PICU passed away today. She was an infant who
had gone to the PICU right before we checked into the hospital so I
didn't get a chance to know her. Her mother would hang out in our
kitchen occasionally and she told us about Sara's bright spirit. They
traveled from Scotland to be here. I'm filled with sorrow for their
trip home without their daughter. And this is the second child they
have lost. I'm often reminded how unfair life can be and how precious
each life is.
blissfully unaware of the tragedy only steps away. He played
some in the hall with his buddy Freddy - a quick duel slashing power
ranger weapons. And he continued to make his long treks for a trinket
- even making his way through Freddy's dad's legs to get to his
March 7, 2005
generally lethargic today and very itchy. Lots of massages
for him - maybe it's just a ruse . . . no, that would be a trick only
his mother would perform. He had pretty severe leg pain such that he
could not put weight on his left leg so walking was not a part of the
It was more
of a video game & movie day. His best buddy Tori visited
and was ordered by King Ryan to play Pac Man video game. Like a
trooper, she picked up the controller and began eating all those
little dots. At this age, he enjoys watching more than playing.
discovered the wonders of Captain Underpants, a book series,
all about - well, you guessed it - potty talk in a fun story. I
remember how much my nephew Daniel enjoyed this series when he was
home today!! We are so happy for them. Home for now will
be an apartment nearby for the next few months. We're told that he
broke many records with his transplant. His brother's cells took to
him like nobody's business. They have made it to the part where I
know each transplant parent holds his breath: the tests show he has
100% donor cells - he has successfully gotten rid of all of his cells.
So incredibly awesome.
It's a day
I dream about. But for now, we are happy chugging along.
In some ways, this is the easy part - in our warped world - especially
since Ry has not had any major complications. In the hospital, the
staff handles everything for Ry. And Greg and I have a chance to
recharge every other night. Once home, we will have to combine all
the duties. But I'm sure we will be delighted at the prospect.
February 26 - March 3, 2005
We have a
cell sighting!!! It's still on the early end and the
doctors have cautioned us that it could go back down and bounce around
for a while, but the new guys have peeked out.
Day 10: .1
(that's a point one) WBC (white blood count)
Day 11: .1 WBC
Day 12: .2 WBC
Day 13: .2 WBC
Day 14: .2 WBC
Day 15: .3 WBC
I think it's
the masses chanting "grow cells grow" that has gotten
them to make their appearance.
jumped out of my skin with the .1 result - only to have Dr.
Martin bring me back to earth again. Ryan's White Blood Count was .1
today. It's such a low, low number - in fact, I have referred during
the last year to Ryan's ANC (absolute neutrophil count) which does a
calculation using his white blood cells and baby cells (called segs
and bands) to determine the level of functioning of his immune system.
Without any segs or bands, your ANC is 0 and you're considered
basically without an immune system. With transplant, all of the
numbers showing cell growth relate to just the white blood cells - his
ANC is still 0 but there are a tiny amount of white blood cells. In
Fairfax, we wouldn't pay much attention to just the white blood cells
without knowing there were baby ones in there to contribute to his
of transplant, we should all rejoice and do a happy dance.
is really oblivious to the cell dance. I check his hands
regularly for the rash on the palm of his hands that tells us that new
cells are coming in. When I ask him to see his hands, he politely and
sort of absent mindedly turns them over for inspection. I show him
the rash and tell him to say hi to the new cells. He seems pleased in
that innocent child way. He has no idea these are the life savers.
is much more focused on Pokemon. I have told you all about
his obsession - and Greg and I have actually diagnosed him with OCD
relating to Pokemon. It really is a phenomenon in and of itself. It
is some sort of coping mechanism for him so he can escape the world of
earlier about our Pokemon shipment off e-bay and our new
incentive program. We have not been successful at getting Ry out of
his room to walk. He would do maybe 1 lap every 3 days despite the
incentive to earn a footprint charm. We talked it up and he talked
about how much he wanted to have the most footprints on the hall. But
when it came down to it - no matter what spin we put on it - it didn't
actually get him up and out. It got us 1 lap for 3 days. No where
near good enough for muscle strength. We sweetened the pot - 5 laps
and he gets a new Pokemon figure (he's not really into the cards -
it's the little 2 inch figures he craves so he can do the interactive
make believe play).
We got about
5 Pokemon figures in the mail. I figured that would last
us a week - do 2 laps a day - what a huge improvement from earlier.
So I built this all up to tell you - today he did 21 TWENTY-ONE
laps!!!!!! Our mistake was letting him know how many Pokemon we had.
There was NO dissuading him from doing the laps. He was determined -
and completely exhausted when he finished. It was taking him over 30
minutes to do 5 laps. He is a determined kid.
of yesterday. Lots of laughter and fun. Our good friend
Lisa came visiting. The purpose of the visits is unpredictable
because Ryan's condition is so fragile and unpredictable. If Ry is
feeling well, the visitor is a playmate. Ry views our adult friend
Lisa as a playmate and for the last year has thought that she is
really only his friend. Ry was capable of play so her visit was
perfect timing. Since we are all attached at the hip, Ry is still a
little weary of us leaving him - but he let us leave to go out to
dinner while Lisa was there.
Let me put
this in perspective: the last time Greg and I did something
fun alone together was in September for our anniversary. I felt a
little giddy on our date to Macaroni Grill - and thanks to some kind
generous soul out there - we used a gift card.
that the cell count didn't go down. A slight increase to
.2. Dr. Martin said we are allowed to get excited once he has two .2
days in a row.
speed by - mainly because there is so much interaction with
folks all day. The tutor, the physical therapist, the nutritionist,
the occupational therapist, child life, activities in the playroom,
the doctor, constant visits from the nurse - and I'm sure I'm leaving
a few out.
I think Ry
is challenging the teacher to go beyond the basics that
most 4 year olds are content with - but she continues to try new
things - which I appreciate. My main interest at this age is exposing
him to stuff in a fun way - because kids this age are like sponges and
love to learn without even knowing it. I want him to learn respect,
sharing, caring - and the rest comes along. But he gets bored with
some of the basics.
appreciate the occupational therapist - there are a couple
and I think they are all brilliant. They use tools to assess his
level and to build on it. They recognized his love of Pokemon, so
they brought in sheets of paper with the names of different Pokemon
missing one letter. He learned how to write the missing letter. It
grabbed his attention and was fun. It was fabulous.
BENJAMIN! And give your new baby sister a huge kiss from us!
we can be excited about the cell growth - two .2 days in a row!
Ry had a
great visit from his best buddy, Tori. I'm sure there are a
lot of great best buddies out there but I'm thinking we have the best.
She stopped in yesterday but Ry was in a mood - turns out his
cyclosporine was high which causes him to be moody and he was very
disappointed that there were no new Pokemon to be had. It's
complicated because he is at a magical age - he believes that his own
power causes the Pokemon figures to appear. His deep sorrow was
related to the fact that he believed he had no power because he was
not able to make a Pokemon appear that whole day. It is a great tool
to help him through this but challenging to explain it all to him
during the times we don't have the little guys. I have begun to
explain to him the mail and patience - and that it has nothing to do
with him not being brave, strong and powerful. But I mix in some of
the magic and explain that the Pokemon guys are desperate to find him
and are trying to figure out where he moved to - we just have to be
Back to Tori:
yesterday he wanted nothing to do with her. But she sat
next to him for ½ hour without saying a word. It spoke volumes.
knew she cared about him - whether he felt ornery or not. She kept
her eye contact to a minimum so Ry was able to view her at his leisure
without feeling like she expected something from him. She has the
today and I was delighted when I left the room for a
short time and came back to see them totally engaged in a Pokemon
Ry is continuing
to eat - small amounts - but significant given the
treatment he has undergone. Most kids are not eating at all at this
stage. But the funny part is that I still feel desperate for him to
eat. It is not uncommon for his hunger to kick in suddenly at which
point he'll say, "I'm thinking about hot dogs, cheese sticks - breaded
cheese sticks not regular, rice, applesauce, mac and cheese . . . so
what." And I am off and running to the kitchen. I arrange the many
items in front of him only to get a bite out of the mac and cheese -
but consumption of ½ of the hot dog. A success in my book.
My dear friend
Darci arrived from UTAH and I squeezed her until I
couldn't breath any longer. She is hilarious - and it's incredible
how comic relief brightens your perspective and mood. It's true that
I might laugh a little harder at things that may be pretty funny but
not laugh-until-you-cry funny under normal circumstances - but she is
truly funny. She also has a unique perspective (in a good way) on
everything and makes me explore my feelings on many issues. I think
she was one of the missing links for me. She also knows her child
side so she makes a great playmate for Ry as well.
- still moving up with .3. GROW CELLS GROW. There is one
nurse practitioner in particular, Sue, who has been with us through
this thick and thin. She met us here the first day we got here on
January 17 when I told her of Ryan's cancer rash returning with 4
bumps. She saw it grow and grow out of control. She watched when
they started to peel off with radiation. She gave me the knowing
smiles when his cells began showing up. And I spoke to her the last
couple days about what an incredible turn around he has made. We give
Ry all the credit.
probably be in an interesting study with the kids on the hall
who were transplanted during the same week. There were 4. The first
was Freddy who is growing cells like crazy (last heard was 4.0) - his
donor was his brother and the matched sibling donations usually grow
much faster than unrelated partial matches - but he struggles with the
sores. Ry was the day behind and we're thrilled to see a few cells
growing - and equally important - he is feeling relatively well.
Franny was the day after and had her first sighting of a cell on Day
11 which is fantastic but has done the predicted bouncing up and down
- and she is feeling pretty rotten - she is doing what you expect for
a successful transplant but it is so sad to see her feeling awful
because she is a cheerful happy child otherwise. The other child
Bryce who was transplanted the same day as Franny is struggling in the
PICU but there is lots of hope that he will be back soon. And it all
could change in a day.
another star in our midst: one of Ry's nurses, Brooke. I
really love the nursing staff here, but Brooke is a great match for us
and Ry. Ry loves her and asks me to find her - even when she's not
here. It started when she committed to memory the first 7 Pokemon of
the Day and had Ry quiz her on them. And she even thought of him on
her days off - he was wanting Laffy Taffy thanks to the miracle of
television commercials. Greg and I couldn't find it anywhere. Well -
Brooke heard us talk about it and found Laffy Taffy on her day off and
brought him some - and then she would read him one of the corny jokes
on the candy wrapper each time she came in. And I think she is an
excellent nurse - you can't buy this type of care.
made me consider that my world is warped - and so right she
is. But when this is your life - it's ordinary to see kids bald and
dragging a huge heavy IV pole behind them with chemo pouring into
their veins. But what her remark made me ponder is how many things
people on the outside might take for granted. As simple as: Your
child walks outside each day and has the sun beat upon him - he can
inhale fresh air. He laughs and learns with other kids his age. His
food intake isn't restricted like the neutropenic kids who can't have
bakery donuts, fresh fruits, fresh vegetables, deli sandwiches, milk,
fast food unless you request from the establishment that it be made
right then in front of you and eaten within one hour and so much more
. . . for fear that there is some type of bacteria or other dangerous
organism that will contaminate your child and maybe take his life. Ry
and the kids on this hallway see only their hospital room, the hallway
and the small playroom day in and day out. They have constant poking,
prodding, and medicines pumped into their bodies. Their own bodies
react by vomiting, getting extreme pain requiring morphine and
sometimes even failure of vital organs. No wonder Ry escapes into the
world of Pokemon. And it all becomes normal to us and we are grateful
the days he makes it to the hallway and is able to talk because mouth,
stomach, GI tract sores are not devouring his body. The simple
pleasures of life become ever magnified. And I'm thankful that I
appreciate each and every moment.
February 24 and 25, 2005
day. Thank you, thank you, thank you.
going better than well - and since that can be a very
transient situation, we are extremely grateful. Ry is working hard
earning Pokemon by taking laps.
So if he's
not getting chemo and radiation, what's happening every
day. It's all about prevention and management of side effects. Ryan
is on whopping doses of two different types of immuno suppressive
drugs to prevent graft vs. host disease - the steroid Solu-medrol and
Cyclosporine. He is on a drug to prevent viral infections, a drug to
prevent fungal infections, and on 3 antibiotics - Ceftaz, Vancomycin
and Tobramycin - to prevent bacterial infections. Of course he has
mouth care four times a day which includes brushing and then swishing
and spitting with four types of solutions. He gets a full nutritional
supplement from TPN and lipids. He gets a few other things on a
regular basis, like platelets, red blood cells, IVIG, and the IV form
of neupogen to stimulate growth of the white blood cells. We have also
added two types of high blood pressure medicine. And all these meds
have their own side effects - damage to the liver, etc. Everything is
- now we just need those new cells to decide to start
growing. It's still early, but we could expect them to make their
grand entrance within the next week (although that would be the early
end of the average).
Ryan accepts your offer to become your boyfriend. Kevin,
our buddy at Fairfax Hospital and the blue ranger, has sent us video
clips of the staff in Fairfax - it is such an amazing and clever gift.
Ryan adores one of the nurses, Vivienne, and she has sent some
smoochy kissing clips. Ryan explains her videos to anyone who listens
and blushes when he watches them. You've got yourself a boyfriend,
friend Lisa Barnett arrived today. Another special visitor
for Ryan and one whom he considers his close friend. They have their
own little relationship and greatly enjoy each other.
day would be complete without Pokemon - adding to his
collection, he earned Eggecutor and Omanyte figures from walking laps
- and thanks to Janelle sending them to us, we were able to live up to
our end of the bargain today.
note about Greg: he loves Abbott and Costello and has
unfortunately roped Ryan into enjoying it. The only thing that makes
it slightly bearable for me is that Ryan is actually chuckling when
they fall down or bonk each other on the head. Boys.
Feb.22 & 23
February 22, 2005
day. So far his response to the conditioning
radiation and transplant are not typical. The bulk of kids feel
rotten at this point and have quit eating and drinking. Ry is
munching all day long - not an extreme amount of food but constant
intake in small amounts. And he is having no mouth issues, no tummy
issues, no bottom issues, no fevers, no aches and pains. Instead, his
mind is occupied with visions of Pokemon battling fiercely without a
care about his health. For a four year old with cancer undergoing
transplant, that's huge.
weird sadistic part of me - that I do not think is
uncommon amongst parents of transplant kids - that thinks that if
there is no suffering then the transplant is not working. I, of
course, had to discuss this with the doctor and was assured that it is
not an indicator of an unsuccessful transplant.
After a four
hour nap in the late afternoon, we partied into the late
night. At about 11:30 pm, Ry and his new girlfriend and nurse,
Brooke, grooved to some of Ryan's favorite hip hop tunes. Some more
Pokemon battling and a light saber fight rounded off the day.
Many of our
old days used to be governed by his white cell count - the
indicator of his functioning immune system. For now, it is at
absolute rock bottom zero. It will be that way until you hear
otherwise - when those cells grow!!! I got a little excited again
last night when one of the nurses and I saw the characteristic rash on
the palm of Ry's hands which is associated with the new cells growing.
What a tease. But - until you hear otherwise, his White Blood Count
(WBC) is zero - that's zip - none - nada - cells to fight viral,
bacterial and fungal infections - each potentially life threatening.
well today - eating bits and pieces of a wide variety of
things. So far, so good. All body parts functioning well. I catch
myself wondering when the other shoe will drop. And then I quickly
remind myself that I can't worry about what tomorrow will bring
because I will miss the opportunities of today. So instead, we sang,
we played Pokemon, we all donned Power Ranger morphers, we played
video games, we played in the kids room, and we surfed the net.
One of the
craziest things about this treatment - this extreme - often
last hope - treatment is that their bodies are so fragile and things
can change - literally on a moments notice. They are empty eggshells
that are trying to get refilled before they crack. On the day we
arrived, there was a young girl being discharged to go home (temporary
N.C. home for out-patient treatment). It is a wonderful
accomplishment that indicates you have overcome some of the biggest
hurdles of transplant. Less than one week later, she was admitted
into the Pediatric Intensive Care Unit (PICU) because her lungs - out
of the blue - stopped functioning properly. Her name is Deondra.
Keep her in your thoughts, cheers, prayers, good wishes. . . That
goes for all the kids going through 5200.
ended with Ryan trekking up and down the hallways - a record
for him: he did 5 laps all in one event - taking him 35 minutes to
accomplish this feat. Shortly before this journey, we sweetened the
pot and told him for every 10 laps he does, we will reward him with
one of the Pokemon that we won on e-bay. Let me put it in
perspective, over the last 3 days, he has done 2 laps. One little
snafu, we need Janelle to ship them down to us since they are being
delivered to our home in Virginia. I guess we shouldn't have offered
this incentive program until AFTER we had the Pokemon. Knowing what I
do about his obsession with Pokemon, it's a wonder why I am still awed
by the power of Pokemon. I think those little critters may deserve a
good deal of credit for his recent health status.
Feb 18 - 21
February 18, 2005
Most of the
day was governed by high fevers of 103 and 104 and light
sensitivity to his eyes accompanying the fevers. Despite that, Ry was
happy and cheerful between all the fevers. He is on a gazillion types
of antibiotics as a prophylactic measure and blood cultures were taken
to check for any kind of infection. No cultures have grown yet so
this may just be a reaction to his new cells. It's too early to be
engraftment which usually takes place 12 to 28 days after transplant.
It was interesting, though, because his palm got the characteristic
rash of engraftment during the fevers. Maybe the cells were just
announcing their presence.
Ry got platelets
and blood this morning. They will likely become part
of the daily routine.
He and his
buddy Frannie made some sand art today but - of course -
not to replace his beloved Pokemon that were always close by.
today but boy are those steroids and meds kicking in. Ry
was quite ornery today - I had to count to 10 many, many times. It's
bizarre to see the effect of some of these meds - he either screams or
weeps over nothing. And it's sad to see his complete lack of control
over his emotions - and unfortunately sometimes it's annoying. And
just when I think I'm at the breaking point, I look up at that IV pole
and am reminded that the meds are the necessary evil making him feel
this way. And to put it in perspective, I would take these moods any
day over problems with his organs or infections. And these moods will
day was not without it's fun and laughs. Thanks to Pokemon,
we delved into his imagination and let him explore his emotions
Ry also had
a special visitor today: Dr. Perdahl from Fairfax.
There's no substitute for the familiar face that you trust so much. I
really like Dr. Martin but it takes time to develop good relations. I
felt like my mom was checking in.
We were able
to give Ryan's room a facelift through pictures and a
special wrapping paper. Our dearest friends the Sochas made a poster
and wrapping paper out of two pictures of Ry in his red power ranger
suit. We used the wallpaper to decorate the outside of his door. It
is the coolest stuff ever. The only glitch is that we had to reveal
the red power ranger - now everyone will know the true identity of the
red ranger! We have also printed out all the pictures sent to us by
e-mail and mail and taped them on the wall in his room. And there's
more wall space so keep sending us pictures!
he began eating again - although it's more like
gathering a hundred things he's craving and then he takes 2 bites.
But it's nice to see him eat regardless of the volume. That may cease
if and when the sores get bad.
feeling good today. He was up and about in the playroom and
managed to squeeze in a lap of walking to earn another foot charm.
Jackie, his old day care provider (or "daytime mom" as I used
to her) made a trip to North Carolina and stopped by with goodies and
love to shower upon Ry.
He was very
happy to see her - and absolutely delighted to get mail
that she personally delivered. When he saw there was a package which
might contain Pokemon, he closed his eyes really tight indicating to
me that he was waiting for me to open it and tell him to open his eyes
for a surprise! I got the hint and luckily was able to deliver
Torkoal, a fire-type Pokemon as I was informed by Ry.
but better than yesterday as they discovered that his
Cyclosporine level was very high. All other levels and organs looking
good. Another day to be grateful.
to eat and gain weight. This is not what we were
expecting although we may have the recipe for success to fight off the
mouth sores - or at least most of them. Those of you who have
followed Ry's story may remember the hideous sores he developed in
October after the first round of Carbo-ICE (cocktail of chemo given to
him after he relapsed in his central nervous system) and then that he
had virtually none after the second round. The only difference
between them was the addition of glutamine (amino acids) in his mouth
not used by the Duke team, we discussed our desire to use
glutamine and they gave us their blessings. If it is working, I want
all the kids to have it and feel almost guilty if they don't have it.
Ry took a
monster nap today and was mildly grumpy (better than
extremely grumpy) through the bulk of the day. But he ended the day
on a very happy note after his nap - rallying to have fun with his
dad. The turning point was probably when his sweet nurse Brooke
brought him some laffy taffy - a treat Ryan has requested for weeks
but we were unable to find anywhere.
It is absolutely
incredible the support team for Ryan - and all the
kids on this unit - from the hospital services. But specifically for
us, our network on the outside continues to grow and the support from
you all keeps me afloat. I have so many incredible e-mails that
inspire me to wake up and face the day - with a smile. Thank you so
much for your heartfelt words and messages. I will never be able to
explain to each of you how much they contribute to my mental health -
which I need to have in top shape for many more weeks and months to
February 16 and 17, 2005:
DAY. Day 0.
battle in me.
Ry has been told since the beginning of his diagnosis that there are
bad guys in him that he is fighting. The medicines have been
described as carrying tiny little light sabers into his body to fight
the bad guys. And when he's destroying the bad guys, sometimes it
hurts inside. At one point today his belly was hurting and he turned
to me and said, "Mom, there's a battle in me."
we gave his body the most powerful fighters yet - NEW CELLS.
Finally. The day was here.
relapsed, the next thing to save him was a transplant using
his own stem cells. We harvested them - but then he relapsed again.
It was determined that giving him back his own cells would be a futile
attempt at saving him. Since his brother was not a good match, he was
then a candidate for a donor stem cell transplant. At that point, we
didn't know where the match would come from. As mentioned before, his
match came in the form of cord blood that was donated to the New York
and nurses explained that the transplant would be very
anti-climatic and uneventful. Uneventful is was - but anti-climatic
is was not - at least for me. The bag with the new cells was very
small - I was wishing that it was 5 times its size - and the amount
was considered a good volume. When the bag was emptying, I encouraged
the nurse to get every last drop as she was manipulating the bag with
her hands to squeeze it all into the tube. I watched each drop enter
into his body and thought with each one that it was rescuing him. I
couldn't help wonder who was the kind and generous mom (and dad) who
so selflessly gave their child's cord blood on the day he was born.
Who was the beautiful child who was now such a part of my child. And
then I considered the cells: how confused they must feel - they were
no longer frozen and were now in a foreign place - probably all
bumping into each other wondering where the heck they were. And
somehow these cells will know what to do - these infantile cells will
figure out where to go and what to do.
end of the transplant, Ry fell asleep. His blood pressure
reached new heights - which is a common reaction - and so he needed
some medicine under his tongue. Unfortunately we had to wake him from
this deep Benedryl induced sleep. Ryan was quite unhappy with our
decision to wake him. He promptly told all the doctors and nurses in
the room (all 5 of them) to get out of his room. They left. After
that, he excused Greg and I. It was maybe 15 minutes later that he
allowed Greg back in the room. I like to see him alive and feisty -
he has very little control over what is going on with him so when he
can order us around, it must feel pretty darn good.
hour later, Ry made his way into the playroom for a game of
Bingo. I was surprised to see him up and about and ever amazed at the
resiliency of children.
the way to the hospital, I stopped to get coffee for Greg.
A Starbucks venti triple shot vanilla latte, no less. When I was
moving stuff around in the front seat of the car, the coffee tipped
over and the entire contents spilled onto the floor - think of all the
milk. Yuck. Shortly thereafter I spoke to my sister Amy on the phone
and when I told her of this particular mishap her first question was,
Did you cry? A reasonable question considering our current fragile
state. But her question made me laugh - because, no, I did not cry -
nor did I even come close - my thought when I was cleaning the coffee
was: if this is the worst thing that happens today, this is a
fantastic day. My measure of a good day. As it turns out, I'd say we
had a great day today.
In the wee
hours of the morning, Ry had a temperature, belly pain,
extreme sensitivity to light (had to cover the monitors in the room),
and a very high heart rate. Thankfully most of the pain was managed
with morphine so he was able to go back to resting within ½ hour.
was fairly inactive in the beginning of the day, but perked up
mid-morning when he surfed the net for new Pokemon. He has become an
expert on e-bay!
bunny. Mid-afternoon was the turning point for him. He was
active and lots of fun. He had his first visit from his teacher and
thoroughly enjoyed her. They seemed to really hit it off. And he has
developed a little crush on one of his nurses, Brooke. You can always
tell when he really likes someone, he touches them when he is talking
to them. When Brooke is tending to him, he almost always has his
fingers tickling her arm or holding her fingers or tugging on her
shirt. The trick to his heart is: someone who listens and pays
attention to his likes (particularly Pokemon these days) and tries to
learn about them - but isn't trying too hard to win his affections.
She comes in and does her job and then subtly talks about the Pokemon
that she has learned about. She is tender and sweet.
"unhooked" for a few short minutes today when they had to
switch out all his lines. He took off doing laps to earn another foot
charm. He made his way to the playroom for the painting activity and
even felt well enough to have a couple bites of food - although always
exiting rather quickly on the other end in the form of pea soup. I
know, more than you wanted to know - but a true reality for all the
kids being treated. It can sometimes govern the day.
an early evening repeat episode of the burning eyes,
temperature, high heart rate, belly pain. It lasted about 2 hours and
Back to the
energizer bunny. At 10 pm, he was sitting in front of the
computer - excitedly talking about Pokemon figures he was searching
for on the computer - and at 11 pm he and Greg were in the midst of an
intense Pokemon battle - and at midnight he was lounging with legs
crossed on his bed reading his Pokemon book that indexes all 800
million Pokemon. Occasionally Jen, his night nurse, would come in and
play with some Pokemon and then tend to his medical needs. I have a
feeling he'll be sleeping in on Friday.
I went to
sleep so grateful - again - for the day.
February 14 and 15, 2005
A happy day. We had plenty of love and appreciation for one another
today. We are so thankful to have this precious time together as family.
Ry had another
big fever overnight of 104 with heart rate in the 200s
but we all slept right through it. All of the cultures are negative
thus far so not much to worry about at this point. He also got
platelets and we're told that may occur every day for several weeks.
have so kindly warned us that the worst is yet to come and
that this is the easy part. We are living our lives by cliches these
days: one day at a time; prepared for the storm; etc. And we will
never know what it will be like until we're in the thick of it. There
really is no true way to prepare.
Ry had a
decent amount of pain in spurts today. As a result, he was
put on a PCA pump that distributes a small amount of morphine when he
pushes the button. His gut is starting to feel the effects of
radiation and chemo. There is no cure until his new cells take over
so the only alternative is to manage the pain.
Ry got a
kick out of getting his Valentine's. A friend of mine from
highschool, Laura (Johnson) Keely, sent a slew of Valentines from her
daughter's class with a picture of all the kids. Every so often
during the day I stuck some of those Valentines in Ry's box along with
the ones he got from a few kids on the floor. He would periodically
open his door to check the mailbox on the outside and would scream in
delight when he discovered a new one.
things gives me a chance to introduce you all to a "Ryism"
that cracks me up. "So what." Greg and I have adopted it from
It's kinda hard to understand how it's used unless you hear it a bunch
of times. The Valentine's mailbox thing might make a good example.
Ryan uses the phrase "so what" to talk about something indirectly
usually about something he wants but doesn't think he should come
right out and talk about it.
After a few
gleeful trips to the mailbox discovering the Valentines
surprises, he said, "Dad, check the mail, so what." And when
"so what", he shrugs his shoulders. In that phrase, he expresses
he recognizes he has gotten a lot but has high hopes that there is a
new one in there.
When he should
bring 2 or 3 Pokemon into the doctor's office but he
grabs 15, he'll show us his hands with the guys spilling over them and
say, "I've got all these Pokemon, so what." If he does something
particularly unpleasant, like his dressing change for his tubie, he'll
have a shy smile on his face and look up at us with puppy dog eyes and
say, "So what, I did my bandage change, so what." - his way
for extra "power."
When we went
to radiation, I couldn't figure out which video to bring
for Ryan to watch during radiation - so I brought 10 - when we got in
the parking lot, I was going to grab a couple - instead, I looked at
Ry and said, "Ryan, so what, I brought all of these videos."
Ry has also
been a champ with the things he has to do as preventative
measures. One of the ugliest side effects of radiation and chemo are
sores and mucositis of the mouth, throat and stomach. It's very
painful and unpleasant. In order to lessen the side effect, he has to
brush and swish and spit with 4 different types of distasteful
solutions. We explained their importance and reminded him how much he
hates the mouth sores. I wasn't sure he paid too much attention.
Today, out of the blue, he said, "HELLO, do I want to get mouth sores,
or what" and then proceeded to ask us to get his mouth care stuff.
Ry got both
ATG and Melphalan today. Last day of Melphalan and last
scheduled chemo EVER IN HIS WHOLE LIFE. Tomorrow will be ATG alone.
He tolerated the ATG very well today - no fevers and heart rate fine.
One day closer
day. More platelets and Ryan's Song started the day off
again. We have fun listening to the song every day - although Ryan
claims that he doesn't like it (but reminds us that we wanted to
listen to it) - a form of embarrassment, I do believe. By the way,
for all you Star Wars geeks (like us), we acknowledge that there is a
little mistake in the song because Han Solo is not a Jedi knight so of
course he does not swing light sabers - but we think they nevertheless
did an awesome job with the song.
interested in starting the day until about noon but once he
got going, he was playful for a good part of the day. It's becoming a
challenge to get him up out of bed and walking but we have plenty more
tricks to get him to do it. And if those don't work, he'll have to go
kicking and screaming: at least we'll know his lungs are clear. For
now, it is incentive enough that he will earn little foot charms when
he takes laps on the unit - a really cool incentive program done by
the unit for the kids.
was not able to resolve quickly enough when it occurred so
he was eventually put on a continuous drip in the early evening. The
pain was sporadic but intense in his belly.
a little more interested in food today - the belly pain was
probably the reason his hunger had disappeared and now that it is
being managed with pain meds, his appetite returned a little. But
it's a vicious cycle - his belly hurts when food gets in it because of
the sores and stomasitis - hunger takes a back seat - pain is managed
with morphine - hunger resurfaces - but food irritates the stomach -
back to square 1.
his LAST dose of ATG tonight. This is THE LAST of his
treatment. Tomorrow is TRANSPLANT day. It should be fairly
uneventful. The bag of cord blood will be taken out of the freezer
tomorrow morning and thawed out. It will then be hooked up to his IV
pole just like any other med or blood product and will be infused into
his tubie. And the seeds are planted.
From there on, it will be managing side effects and helping the organs
hold up under the attack. The new cells will have to figure out what
to do in their new host. This will take time. The cells usually
engraft (the point at which the cells have set up camp and begin to
manufacture red cells, white cells and platelets) within the third
week. Sometimes - although we certainly do not expect it to happen to
Ry - the cells are no good and do not engraft. We're going to skip
right over that nasty option.
is merely the beginning. The cells will not keep pace
with the body and transfusions will be necessary. The rest of the
body has taken an immense hit and various organs may need help. The
opportunity for infection is great and many prophylatic medicines are
given. And the greatest concern for the unrelated donor transplant:
graft versus host - when the new cells attack the organs in the host
body. Drugs are given to prevent this as well. Most of the drugs
will continue for the 100 day period. Many will continue over the
first year and a mask will be worn for a year post transplant. And
we'll be thrilled to do it to get a healthy Ry.
I love getting
messages - I get rejuvenated from them. Bummer -
though - I have not been able to get e-mails since Monday because the
satellite account was overloaded. If you happened to have sent a
message Monday or Tuesday, I would love it if you resent it - maybe in
a couple days to give us time to sort out the problem. I saw a bunch
of messages but the only thing I could see is that they failed to
reach us. Such a bummer.
to add to your thoughts and prayers: Grow Cells
Grow!!! We have gotten this far from the enormous amount of love and
support from you all and one tough Ry Guy.
February 10 - 13, 2005
under anesthesia: He did great. He has full body
radiation and a testicular boost in the mornings. The boost because
that's a place where the cancer tries to hide.
fluids and blood: smooth sailing. He paraded around the
clinic attached to his IV - only stopping to engage in a Pokemon
battle or to create a masterpiece painting with the art lady.
radiation awake: So easy. He sat down on the table and was
anxious to get his Pokemon video started.
At home -
you'll be surprised to know - we battled Pokemon some more.
Ry picked his latest favorite Geodude and used his roll out attack to
defeat all the guys he let me play with. At one point he felt so
sorry for me for losing each battle that he chose the Pokemon Magicarp
and told me that I could beat Magicarp - telling me in the most
sympathetic voice, "Poor thing, mom, Margicarp doesn't have any
We had a
good day with Ry today.
I went to
bed reciting my usual thanks for the day and prayers for tomorrow.
DAY OF TOTAL BODY RADIATION AND ADMISSION TO HOSPITAL.
his last total body radiation in the morning. The very
last one for the rest of his life.
it to kill off essentially all of his bone marrow. The bone
marrow is the factory that produces your blood which includes red
blood cells, white blood cells and platelets. The total body
radiation should kill the bulk of the marrow - high 90 percentile.
The rest of the therapy after radiation should cover anything left
over. As you recall, Ry had cranial / spinal radiation as well.
That's because he had cancer in his central nervous system when he
relapsed so we need to make absolutely certain that it's all gone
there and that it has really no chance to return.
is to kill off the marrow but not tax the vital organs
beyond their capability. Once the marrow is gone, he needs new cells
that can start a whole new factory. That's where the transplant comes
in. The new cells are transplanted - just like a transfusion of blood
- and they start to grow and learn how to produce their own new cells.
after the transplant, he has a multitude of drugs to
counter various side effects like viral, bacterial and fungal
infections and graft versus host disease.
radiation it was off to 52-Hundred (the name of the Pediatric
Bone Marrow and Stem Cell Transplant Unit) to check in for the long
haul. The expected stay is 30 to 60 days.
We checked into 5212. We told Ry over the last couple days
that we were going to go to the hospital to get new cells and to kill
all the bad guys. We told him we'll be staying at the place where
Franny is staying - and that actually made him smile.
Ry had a
blast on his first day. I think the nurses and staff were
lucky to see him on such a good day. He tromped right into the
playroom and pulled out a handful of his Pokemon. He and Franny
shared his guys and laughed and played.
in rare form all day and evening. It was so much fun and a
relief to finally get on the floor in the unit.
got his chemotherapy called Melphalan. He will get it today,
Sunday and Monday. We didn't quite master the drugs to prevent nausea
and vomiting - or this is just a different ballgame and there will be
no avoiding it - hard to tell. A big part of it relates to the damage
that the radiation has done to his GI tract and specifically for Ry's
gut. He vomited several times and had some very sharp pains in his
belly. He stopped eating and drinking. All of these side effects are
expected - our goal is to try to lessen the yucky side effects and
manage the pain.
The day was
overall good despite these challenges. He had an EKG and
a chest x-ray to make sure things look good - and good they look.
Yipee! Although we hate to see him feeling poorly, these side effects
are not life threatening. The ones that scare us the most are the
ones dealing with the organs or serious infections. So far, so good.
He did manage
to get up and about a few times. His big incentive is a
program they have wherein they reward him with a little plastic
footprint charm that represents that the patient has walked 5 laps on
the unit. He notices other kids walking and he'll lament that they
are earning footprints and he is not. It's so important to get him
walking even if he screams and cries the whole time because pneumonia
is the enemy and laying idle on the bed is an invitation to pneumonia.
cool program that Duke has is a Best Buddy program.
Volunteers sign up to become a friend to a patient. Their job is to
do fun things with the patient - we told Ryan that this person is here
just to play with him - no one else - and she doesn't have any needles
or medicines and won't make him do anything. Ryan's best buddy is a
really cute, sweet girl named Tori. She came by to meet Ry today - he
was sitting on his bed with a bunch of Pokemon figures - which might
surprise you - and magically she produced a package of Pokemon cards
for him. I think they will be fast friends.
she provided us with the most excitement since our arrival
at the hospital. When she was getting ready to leave, she fainted at
the doorway. I started yelling, Oh my God! at which point Greg and I
started yelling for help in the hallway. When she crashed on the
ground, Greg pulled the emergency switch and the hallway filled up
with nurses and doctors. Dr. Martin was able to squeeze into the
small opening of the door. She woke up an instant later as if nothing
had happened. Thankfully she was in a place where she could get
immediate excellent medical care. Dr. Martin had her stay for an
exam. It seems that she will be absolutely fine but had just had a
few things working against her (like low on food and a small hot room
where you're meeting people for the first time, etc) that conspired to
make her faint. Most importantly, she will be fine. Ryan was the
most calm and collected of all of us and continues to talk about when
he can play with her next.
February 13, 2005:
was a little rough for Ry. He remained in his bed - in and out
of sleep - the entire day. We got him up for a bath and to move
around one time. He was not especially pleased with us. His belly
was the big complaint - just feeling a lot of sharp, intense pain in
the belly - likely related to his gut reacting to the radiation and
chemo. Well, Duke pulled through again - they, too, like to manage
pain for the kids. Since the anti-nausea drugs weren't covering him,
they put him on a pain pump so he can push the button to receive some
morphine when he experiences bad pain. The pump only dispenses a
certain amount so he can't overdo it. Ryan's pain is not so bad at
this point that he needs a constant infusion. And for Ry, he will
also get some benefit out of thinking he is getting some of the
medicine even when he is not - mind over matter.
Once he had
the pump, he rested peacefully. He got his second dose of
Melphalan with only one more scheduled for tomorrow. He was put on
Ceftaz, an antibiotic, and Flagil for fungal infections. We switched
his anti-nausea medicine to Kytril and either it did the trick or the
combination of pain medicine and Kytril because he did not vomit the
rest of the day.
ATG - a horse
serum - was given to Ryan over about 8 hours. Its
purpose is to wipe out the bone marrow along with the chemo and
radiation. It's worst side effect is usually really high
temperatures. They see them in the 106s - despite the fact that they
premedicate all the kids with benedryl, tylenol and solu-medrol. Ryan
did pretty well and slept a good deal of the time. His fever reached
103 / 104 and he didn't even notice it. His heart rate concerned Greg
and I when it reached the high 190s for a while. During those
moments, he usually stirred and reached for his pain pump and his rate
would go "down" (everything's relative) to the 170s.
But we had
a surprise ending to the night: Ry rallied. At about 9:30
pm, he sat up and wanted to play. He was even interested a little bit
in drinking and eating (does Pez candy qualify for eating). He was
very excited to discover Valentine's cards in his mailbox on the
outside of his room door. He had me help him maneuver to his Pokemon
poster to circle the guys he doesn't have.
We said goodbye
to our visitor, Janeen today. She came on move-in day
and was a HUGE help. It was so fantastic to see her. We have the
best friends and family.
On the forefront:
Ry will get his last dose of Melphalan tomorrow. He
will get ATG tomorrow and Tuesday. And then Wednesday: TRANSPLANT DAY
- DAY 0. The new cells arrive to rescue his body. As the saying goes
on 5200, "Grow Cells Grow" will be our daily prayer - and we
join in with us.
February 5, 6, 7, 8 & 9, 2005
of February 5 & 6, 2005:
after the events of the week, the weekend seems a little
blurred. Most of all, however, it was fabulous. We laughed a lot and
ate a lot. On Saturday, we made it to a birthday party for Frannie -
or as Ryan calls her - "piggy tails". She's an adorable little
who has an immune disorder and is going to have a transplant about the
same time as Ryan.
not been around that many kids for a long, long time - not
since before his diagnosis. He soaked it all up - flirted with the
girls, admired the big boys, and stared in awe when all the kids dove
on the ground trying to pick up the toy that flew out of the Dora
February 7, 2005
A day in
the life. We had the highest highs and the lowest lows.
Radiation - day 1. The first session went smoothly with
Ryan under anesthesia. He seemed to be physically and mentally
handling the therapy well. When we got into the room, he saw the
milky white medicine called Propofol that puts him to sleep. He
rested his head on Greg's shoulder and said, "I'm going to be a sleepy
head." So sweet.
radiation, we went to the clinic and he was a social
butterfly. Especially happy to see one of our favorite people, Kelly
- a nurse from the practice in Virginia. He accessorized as usual
with his Lost Galaxy morpher on his arm and continued to hold his arm
out - giving each person he passed a chance to be mesmerized by it
when he pushed the sound button to make some ferocious animal noise.
Then we hit
rock bottom. At about 1 pm, a really bad headache
developed. By 2 pm, it was excruciating - uncontrollable tears
streaming down his face and him repeating, "It hurts, mom, really,
really bad - it really hurts." The timing could not have been worse.
His afternoon radiation begins at 2. I feel like a broken record, but
- he was the champ and stayed completely still but was screaming in
pain during the whole session. It was torture for all of us.
We went to
the clinic because he needed platelets - having only 17
(17,000). His pain got even worse - if that's possible. For about 4
hours we battled the headache and around 3:00 added in vomiting. It
was scary because it was so thick that he couldn't get it all out and
was not able to breath - just for very short periods but I felt panic
rising in my throat. The doctors were puzzled by his headaches
because it is not a common side effect of radiation. After several
debilitating headaches even with the use of narcotics and the
vomiting, an emergency CT scan of his head was ordered to see if there
was something going on in the brain. After painfully waiting about an
hour and a half, we learned that the CT was clean. Still puzzled by
the headaches, but thankful beyond words that there was no tumor or
other evil in the brain.
We got home
about 8 pm and it was unbelievable - Ryan was a new man.
We played hard - we put in one of his favorite CDs and danced on the
counter - we all picked out Pokemon and battled with all our hearts -
and then topped off the night by playing a Ninja Turtle game on
February 8, 2005
day. Amazing how adding some IV fluids between radiation
rounds and some additional IV anti-nausea drugs can change things so
drastically. Ryan was energetic - despite low hemoglobin - and
playful and hungry all day. And when I say all day - we had to turn
the lights off and turn off the movie he was watching at 11:30 pm! I,
on the other hand, barely stumbled into bed and would have been happy
to sleep on a rock.
radiation under anesthesia went off without a hitch. His
wake up was so easy. As mentioned, we made our way to clinic
afterwards for fluids and Kytril. Ryan was feeling great and made the
rounds in the clinic. He found a 6 yr old girl watching Scooby and it
was crush at first sight. He pulled up a little chair next to her and
made himself at home. One of the nurses commented that most guys she
knows go to clubs to pick up girls but Ryan comes to the clinic.
radiation was a breeze - before we went, Ryan said, "I
can do it - it'll be easy because I don't have a headache." Sure
enough, he just watched his Pokemon movie. It was like break time for
him - I think he wanted to stay to watch the end of the episode.
Back at the
apartment, we enjoyed the Ry-guy. He decided to make some
"ingredients" - his form of cooking. So into the kitchen we
His concoction consisted of raw egg, lime, apples, cereal, strawberry
preserves and grits. After microwaving the concoction for 3 minutes,
he triple dog dared his dad (he remembered the phrase from A Christmas
Story) to eat it. Poor Greg.
we discovered the webcam. We were able to visit with Ben and
family, Rick, Papa, Janelle and Evan via a camera. It was so awesome
- technology is mind boggling.
February 9, 2005:
A near exact
repeat of yesterday. Both morning and afternoon sessions
of total body radiation went very well. Ryan is very comfortable with
the setting now. At points he and Greg are involved in full power
ranger poses and battles in the hallway. Ryan is decked out in his
power ranger or Yu Gi Oh pajamas - the pajamas per radiation techs
request because they want him in thin clothes.
break between sessions, Ry got a red blood cell
transfusion. So far, so good for the rest of his blood counts and
again once we got home - having to force Ryan to retire.
It's hard to make him go to sleep when you know he is having so much
fun and he won't feel like this for a long time. I fell asleep to the
sound of him laughing and joking with Greg. Such a sweet sound. We
will have one more night with the 3 of us together in the apartment
and then to the hospital where one of us will stay with him overnight.
I am already looking forward to the day he will be back to this
We have so enjoyed getting messages and hearing from you all by e-mail
and US mail. The pictures are the best. Get this - Kevin from
Fairfax Hospital has even figured out how to send us short video clips
of some of our friends from up there. If only you all could see
Ryan's face when he watches them. And Charawn, we request that you
send us a video clip singing (1) Dashing through the snow, and (2) any
Beyonce song. We'll look forward to your collaboration with Kevin.
UPDATE...Wed. February 9 (from the Support
TBI (Total Body Irradiaton) has started.
Monday (Feb.7) was the start of TBI. Session 1
(of two he'll have each day for the next 5 days) went well initially.
Then all Hell broke loose. He started vomiting profusely within a couple
of hours, he got a SEVERE headache (so bad that at one point he passed
out from the pain). The doctors were of course concerned and Greg &
Lori were even more concerned. They feared a possible brain tumor! He
was rushed to an emergency MRI to test that theory.
news was that, upon first analysis, it was NOT a brain tumor causing these
severe reactions . Based on the fact that he had just received a total
body irradiation, the hopeful theory, at least with Lori & Greg (because
according to the doctors, they had "never seen such a severe reaction
to radiation" if that's what it was). Hopefully it WAS Ryan's body
dealing with it's first ever dose of TBI and was just a severe side effect
(strange that we'd have to hope for such an awful thing). But, the alternative
was not what they wanted to hear for sure.
Needless to say, Ryan was in very bad shape
for most of the day. He had to be strapped down for the afternoon TBI
because he was miserable and was very, very vocal about his discomfort
(wouldn't we ALL be!). But, again, Ryan laid perfectly still for 15 minutes
of radiation. He truly is AMAZING and so, so BRAVE.
day, however, things took a turn for the better!! His vomiting stopped,
the headache dissapeared and he was energized, hungry and very playful.
It was like he was possessed before and the demons had left his body.
He was his old wonderful self again. What a RELIEF for everyone!
Feb. 8th....Day 2 of TBI.
A perfect day. Everything went well. Ryan slept great the night before.
No nasty side effects today and it was business as "usual".
The family played together at night, cooked crazy foods in Ryan's Easy
Bake Oven and talked to family on their new WEB CAM! (more info. on that
is day 3 of 5 for TBI. Hopefully another "good" day.
The Support Team
UPDATE...February 3 and February 4, 2005
I could not list one complaint if I tried.
fantastic with the electron beams radiation - 2 sessions on
Thursday and one on Friday - arms and legs are done. We have now
zapped the cancer rash on his whole body - I feel like laughing at the
rash but I don't want to anger it - just quietly go away.
have been decent so we have had only had to check in to
the clinic to have his blood drawn, take vitals and a quick exam. We
have spent the bulk of our time on having fun. Ryan has been content
- even seeking out his own private time. It means he is feeling well
and confident. I loved it when I could hear him making all the
different noises for each Pokemon guy while they played and battled
each other. I walked into his room to check on him at one point and
he was lost in his own imagination inside his closet sitting on one
pillow with one supporting his back against the wall. Utterly and
He is still
the starvin' Marvin. Unfortunately that means lots of
fast food because he loves Bojangle's dirty rice, McDonald's french
fries, and Chick-fil-A's nuggets. We're happy to beef him up for the
We are now
set to graduate to the big radiation guns. We went to the
radiation clinic for a practice session for the total body
irradiation. As long as things go smoothly this weekend, he will have
5 days of radiation with 2 sessions a day. Each will total about 15
minutes with stops at certain intervals to re-position him or the
machine. Ry seemed comfortable with the setting for the TBI. He will
not have to undress and he will be sitting in a somewhat comfortable
position watching the movie of his choice. The morning session is
scheduled with anesthesia and the afternoon without.
If he is
feeling okay throughout the week - unpredictable with this
heavy radiation - he will stay out patient. If he is not tolerating
it well, then we check in. In any event, we will check in to the
hospital for our long stay no later than next Friday. After that, he
will receive 4 days of a combination of Melphalan (chemotherapy) and
ATG. Then one day of rest - AND THEN TRANSPLANT DAY - DAY "0".
That should land on February 16, 2005.
before the Storm:
For this weekend, we will have relaxing low key days and try to
squeeze in as much food and fun as humanly possible. For the first
day since we've been here, Ry does not have to go to the clinic on
Saturday. I get to draw his blood for his lab at home and deliver it
to them. From the looks of things from his labs this week, he might
need platelets on Sunday but all else looks good.
will have to make a trip in because there are some specific
labs done right before TBI. But we will sleep in and make our way in
at our leisure.
We have waged war against his cancer. I - of course - have never been
in a true war but I can't help feeling like I have some tiny
understanding of what it may feel like the days leading up to a big
battle. I am nervous - I am anxious - I feel strong and weak at the
same time - I know there are huge risks and the ultimate price is
sometimes paid - but I know it is for the best cause . . . Ryan's life.
Keep us in
your prayers and good thoughts.
February 1 and 2, 2005
day. The sun even seems to be shining brighter.
Ryan had no fevers and was relatively comfortable all day. The day
started with anesthesia and morning "laser beams" as we call
radiation. Only Jedi knights are privileged enough to get laser
beams. It was to his arms and legs - getting rid of the rest of the
pesky cancer skin rash.
of the rash came back but wasn't especially helpful - it
just told us that it was "the" rash. We were hoping to learn
something more about the death of the cells due to radiation.
The day ended
up being long for little Ry. After radiation, we went
to the clinic for blood counts and exam. Ry met SkyBlue the
speechless clown. She was adorable. Another side of Ryan is a
bashful, flirtatious Ry. It's when he is interested in someone but a
little weary. He recognizes she is not threatening (no needles or
syringes) so he takes an immediate liking to her. He made eyes at
SkyBlue and was completely enthralled by her. The friendship deal was
sealed when he pulled her finger to release the juggling ball from her
mouth. I know he is already looking forward to their next meeting.
We left for
a short time only to be called back when the results of
the chemistry tests of the blood revealed that his electrolytes were
bad. Back to the clinic for a two hour infusion. The events of the
day were done by 6:30.
Ryan was STARVING and playful. He is back on the steroids
which causes the hunger to kick into overdrive. It also causes severe
mood swings - and as far as side effects go - it's not a bad one - no
pain - no health risk - I just have to remind myself to count to 10 a
of the night was playing Harry Potter. Ryan used his wand
and sword to call up and ward off the snake and the spider, played by
yours truly and Greg. Let's just say it's a good thing that there are
no cameras capturing this on tape.
woke Ryan up just to put him back to sleep and get his laser
beams to his arms and legs. All went smoothly. The wake up has
gotten better as we tweak the drugs and methods of putting him to
sleep. The anesthesiologists are fantastic here and work with us.
But I must say my favorite is the group of folks working the radiation
machines. Terrance has become our buddy. We're talking about one of
the best facilities for radiation treatment in the world - but even
more impressive are their efforts to help the child through this
experience. They could all do their jobs - and do them exceptionally
well - and then call it a day. They go far beyond that. Dr. Larrier
printed out her pictures of animals and insects that she took on her
trip to Haiti. Terrance treats Ryan like a person and talks directly
to him - and he tries his best to talk about Pokemon or any other toy
du jour. Emily from Child Life shows up to hold Ry's hand from
beginning to end. They entertain all of our crazy ideas with various
pillows and blankets and music CDs and methods to administer drugs.
the routine by now: after radiation, we went to the clinic
for blood draw and exam. We had a meeting with Dr. Martin today.
Things are still on track and we are all optimistic. We got a small
break and were able to come home for a nap before the afternoon
radiation - the twist this time: without anesthesia. There
is no way a four year old can make it from midnight to 4 pm without
any food while on steroids. So, once we introduced the steroids, we
knew we had to find a way to get him to do the radiation in the
afternoon on his own. Things went really, really well. Ry was
amazing. We popped in a video of High-5 and he just hung out. The
end got a little hairy but - as usual - he stayed absolutely still -
he just let us know that we were pushing our luck. Thank goodness for
the Yu Gi Oh Blue Eyed Ultimate Dragon that he clung to in his hands.
He kept Ry company when we all had to leave the room.
let Ryan put a sticker on him because not only did Ry do a
good job, but so did Terrance.
consisted of making everything in the kitchen - and then
some. Pizza and McDonalds were a must. So were pretzels, hot dog,
noodle soup, Swiss cheese, chocolate, ham and cheese sandwich,
peaches, soda, rice, spam (gross, I know - it's his dad's fault),
Cheetos, lemonade and a couple medicines we disguised in more food and
drink. For you NoVa HemOnc people: no sardines or slim jims today -
maybe had his fill lately.
I am really
enjoying getting everyone's messages. My favorite: the
pictures - and keep 'em coming. Loved to see the Gillis clan holding
up a "We love you Ryan" poster. It will be printed and hung
wall in his hospital room - along with the pictures of Ben and family
and the others wearing Ryan's t-shirts. Thanks - everyone.
Update January 31, 2005
As you now know from my update from yesterday, January didn't go exactly
as we had hoped, but we ended on a good note.
body: The bumps are melting. So awesome.
the back of the legs: Started radiation to that area today and scheduled
to do 6 sessions (one tomorrow, two Wednesday and two Thursday).
Looks like we're beating the infections - cultures have been clear for
at least 72 hours. That means no yucky bugs endangering him and no surgery
to have the lines pulled and replaced with temporay and permanent ones.
If we keep on this schedule, we have the green light from the whole bone
marrow team (all the docs and whoever else is on the team)to get started
next week with Total Body Irradiation which means we're going to transplant.
The chemotherapy was voted down by the team. Instead, he will be on steroids
pre-transplant. Steroids are an important part of treatment during transplant
but he will start them early. I knew about many of their positive qualities
relating to cancer treatment but just learned that they alone can kill
cancer cells as well. Let's hope they're up for the challenge.
to haunt us. He reached an all-time high of 103.7 this afternoon right
before the second round of radiation. It has puzzled us because he does
not feel hot - just a little tired and slightly cranky. Dr. Martin thinks
it may be related to death and growth of tumor cells - death on the skin
on the stomach and back and growth on the legs.
It made the
afternoon radiation a little hairy because you just don't feel like staying
still when you're running a fever. With the legs, he is able to watch
a movie which helped to distract him.
fantastic as usual in the entertainment department. Ryan wanted to discuss
all the types of pizza he wanted to order after radiation so Greg placed
an order that Ryan could hear over the loudspeaker into the radiation
room and right when the session was about to end, Greg told the "pizza
guy" that he needed to check with Ryan about some aspect of the order.
about the Ry-Guy:
He had a
fantastic day. The morning was under anesthesia but he bounced back remarkably
fast. Part of the reason is that when we went into the hospital in the
wee hours because of the morning fever, they hooked him up to some fluids.
The combination of fluids with just propofol is ideal.
was done without anesthesia so no denial of food and drink. He slept a
good deal during the in between time - likely directly related to the
high fever brewing in the afternoon.
a joy after the leg radiation. He was so cute and cheerful. We were all
piled in an exam room while Ryan entertained us. After having his fill
of pizza (maybe a direct result of watching a Ninja Turtles movie in the
radiation room - for those of you who don't know the Turtles - they LOVE
pizza), he pongued (our word for fart) in the chair and sheepishly said,
"Gas over here." When the nurse brought in a urine specimen
cup, he looked at it with disdain and explained to her that it was too
small for him. He flirted with Emily in the lobby of the Children's Center
and he made his usual greetings to the fish in the big fish tank.
you who have ever watched a movie with me will relate to this Ryism. He
watched a movie called Never Ending Story and he was constantly talking
to the characters, "Run!" "Don't do that!" "That's
not nice." Of course since I do it, I think it's hilarious. We spent
the evening eating, playing, lathering up Ry with lotion and watching
Angie headed back to Pennsylvania and we will miss them dearly - but enjoyed
every minute they were here. When it's all said and done, we have a nice
from Lori (Sunday Jan. 30th)
Sometimes I wonder why I occupy this skin. Why my path is this one.
Why I have to watch my child suffer. There is no answer. And there
is no alternative. There is hope and it will carry us. It's crazy
that we are only beginning this journey. It is a life saving journey.
And we need to brace ourselves because things will have to get worse
before they get better. But better they will get. I cherish each
smile that Ryan is able to muster in every day. Some days there are
more than others.
mom told me that when she was digesting the news of her
child's diagnosis she kept saying to herself, "Cancer is something
that happens to other people's kids." It does not seem real. It's
hard to believe we brought Ryan to Duke only two weeks ago. It could
have been an eternity. Ryan's disease continues to surprise and
confound the experts. But we continue to believe in our motto of
enduring and persevering - and have strapped ourselves in tight for
the bumpy ride.
piece of our journey has been our most challenging yet. But
we must hold steady - Ryan is counting on us. I have felt lost
without our internet connection. I have come to rely upon messages
from friends, family and strangers. It is also my greatest therapy to
be able to write about what is happening.
We got here
on Sunday with high hopes. Ryan was looking and feeling
great. That evening while giving him a bath, we noticed two spots on
his shoulder. A further inspection revealed two more. They were the
typical sight for his cancer rash. I felt the fear creeping in but
knew that he had always responded beautifully to therapy and had the
utmost confidence we could stop the rash in its tracks without much
effort. My fear was primarily that he would not be able to start
transplant on schedule. Within two days, his rash grew by leaps and
bounds - the lesions that started out sesame seed size turned into
raisin shapes - round and all. The number of rashes increased more
rapidly then we had ever seen - the 4 had turned into easily 84 in two
the aggressive nature of his disease, his treatment is a
work in progress. An evaluation must be done essentially on a daily
basis. The first week was supposed to be work-up which was going to
be fairly low key. Instead, we added four days of chemotherapy
beginning Thursday. Chemotherapy increases the toxicity of radiation
so a "lighter" chemotherapy agent was chosen called Fludarabine.
Unfortunately, as Dr. Martin put it, Fludarabine was a miss hit - the
rash did not disappear or start to disintegrate - in fact the bumps
continued to flourish. Since the cancer involvement appeared to only
be in the skin, the plan was to forge ahead with cranial / spinal
radiation. And an additional therapy was added to include electron
beams to his skin.
Sunday, a severe headache awoke him from his sleep and he
threw up several times. I ached beyond belief - the only time he has
had these symptoms is when he had cancer in his central nervous
system. I wasn't sure we would make it to radiation. That day Dr.
Martin came in to meet us and do a spinal tap which is the test to
determine if there is cancer in his CNS. Because of the weekend
facility, they were unable to do the spinal under sedation. It was
Ryan's first spinal while he was awake. All and all he did
phenomenally well. He stayed perfectly still - although screaming his
displeasure at all of us.
I needed finally came. His spinal fluid was clear -
completely clear - no white blood cells; no glucose; no protein. For
now, the only known involvement is the skin - Although Dr. Martin
believes that there is likely a "mother" cell sending out its
daughters who have gone to the skin. We need to kill that mother.
week was exhausting. He had to be under general anesthesia
for his cranial / spinal radiation. That means no eating after
midnight and no drinking after 6 am. It also means waking from
anesthesia - some kids wake as if they were never asleep and some are
very out of sorts. Unfortunately for Ryan, he does not handle the
drugs well and feels very out of whack for several hours.
Immediatelyfollowing radiation is a visit to the clinic. His counts were
every day - whether it was platelets, hemoglobin or electrolytes, we
have had to have many infusions and transfusions. After the clinic is
the electron beam therapy - a form of radiation to the skin.
Monday was rocky. The plan was to do it without anesthesia so he would
a chance to eat and drink during the day and so he would not have
double anesthesia wake ups. But it was torture for him. He was
anxious about laying on his stomach with his face flat down (a very
uncomfortable and intimidating position). I scoured the stores to
find a comfortable donut pillow that might have provided a more
comfortable setting. I think because of his anxiousness, he dove on
the table face down right when we got there. It started on a bad
note. He has 2 therapy sessions on his back and 2 on his front. He
only has to hold the position for a couple minutes, but he has to be
naked and a thick cold gel pad has to lay on top of the skin. For a
four year old, it is plain torture - what you can't see is scary. And
breathing the same little source of air is uncomfortable. But as his
track record suggests, he was a champ and stayed completely still for
the 4 shots of therapy. And as expected, he yelled and cried the
whole time. When we tell him he is going a great job, he responds,
"NO I'M NOT!" And there's no convincing him otherwise.
After that experience, we opted to have him under anesthesia for the electron
beams. It made for some challenging times when he could not eat or
drink from the time he woke up until about 4:00 pm. And his mouth is
like cotton - probably from the Fludarabine.
of radiation showed no measurable improvement. Finally,
after 4 days of radiation on this past Thursday, the bumps started to
peel and then over time turn purple and then brown. To complete their
death, they flatten. Ryan has been itchy from the therapy but I love
that because it means they are dying.
Still plaguing us is the back of his legs where many bumps continue to
because that area is out of the electron beams. We have began exploring
other chemotherapy to try to control some of the disease while he is getting
no therapy for him systemically. We do not want to give his cancer an
opportunity to develop in his bone marrow or any other organ. It is not
preferred method to have chemotherapy with radiation because it
greatly increases the toxicity and increases the chance of fatality
due to complications. However, he can not have a transplant with
rampant disease. And to date, a transplant is his best medical chance
to defeat the disease.
our challenge is some serious infections that have
developed. On the night after his first radiation treatment, he
spiked a temperature of 102.5. The thought at that point was that it
was from the radiation of that day and the chemotherapy that finished
a four day treatment the day before. The following day he spiked
another similar temperature. Cultures had been drawn but nothing grew
over the first day. By Wednesday, however, the cultures grew - and
did they ever. He has grown a staph, a strep and a gram rod positive
bacteria. Each ugly and scary in their own rights. We started
antibiotic infusions at home around the clock with Vancomycin and
Cefepime. The infections continue to grow in the following days
cultures. His Vancomycin was increased. If they can not get
controlled, the plan is to try a different antibiotic. If they still
persist, they will likely pull his line. That would likely set us off
track again. For now, I will believe that we will control it. It is
crucial to get things moving.
In an effort
to remain sane, I enlisted the help of my trusty research
team, Kim and Lisa, to call experts for additional advice. I also
spoke with Dr. Perdahl and of course Dr. Martin. With team effort, we
have formulated some short term and long term alternative plans. If
successful this week in ridding him of the infections, the treatment
will only be electron beams on Monday and possibly electron beams
later in the week to his leg as well as chemotherapy during the week.
One suggestion for chemo is low level VP-16. We're hoping to avoid
any surgeries with the lines.
would be the start of total body irradiation for 5 days.
That is the point of no return. A transplant has to be done after TBI
because permanent damage is suffered to the bone marrow with the first
dose. We hope to be able to do these sessions without anesthesia.
The promising aspects is that he will be sitting in a comfortable
chair with his clothes on and can watch a video. The challenging part
is that he must be in the room alone for 15 minutes two times a day
and be very still. We're going to have to pull out all our best
tricks for this one. The two-a-day anesthesia is really rough so it's
worth the try. He will be admitted to the hospital no later than the
5th day of TBI and earlier if he needs to be. The decision as to
whether to forge ahead at this point with TBI and transplant will be
made during the week. The final decision will rest upon whether there
is a reasonable chance that transplant will be successful - a question
no one can answer with certainty.
marginally intact has been the presence of our visitors.
Rick drove down with us to help with the move. A few days later Kenny
came to visit on the day we had our scheduled meeting with Dr. Martin.
Ryan enjoys Rick and Kenny tremendously so both visits were a huge
help. Rescuing us last weekend was Janelle and Papa. And then our
saviors: Chris and Angie. Here for the duration. They are absolutely
amazing. Ryan finds a nook on the couch next to Chris or Angie and
just hangs out - whether he's feeling good or not. He likes being
right next to them. They were also in it through thick and thin with
all the radiation, no eating or drinking, cranky wake ups, high
fevers, antibiotic infusions, and playing hard.
continues to amaze us. Even after a week of radiation with
anesthesia and food / drink restrictions, he outlasted all of us on
several nights. One night I hooked him up to the antibiotic pump and
dozed off on the couch. Ryan was sitting in Chris' lap on the ground
playing computer games when the alarm went off on the pump. I
struggled to get my bearings while Ry didn't skip a beat with his
computer game - except for his hands over his ears to block out the
noise from the pump. He's having fun with the nurses and doctors -
using the force on them to make them fall backwards (and one doc even
took a dive to the ground!). He also scared a few hospital personnel
with a squishy spider and he continues to work the angles with the
girls - taking a special liking to Emily from Child Life.
It's 5 am
Monday morning and Ry has a fever of 103.3. Off we go to
the hospital for our first exposure to the bone marrow unit so they
can check him out before radiation - hopefully we'll be able to make
that appointment for therapy and not have to check in. I'll do my
best to keep you posted but for now duty calls.
Support Team UPDATE (Tues.
Ryan underwent his first radiation
therapy yesterday. To backup a couple of days though...the setup for this
procedure took many hours with many doctors, technicians, and specialists
touching, handling, positioning, and eventually marking his body with
permanent markers for plotting purposes. Ryan went home that day with
most of his body marked up with black marker mapping out how/where yesterday's
radiation therapy should be carried out. Greg & Lori said he looked
like he had tattoos all over his body.
brave as usual, was perfectly still for the 15 minute radiation therapy
and was yelling in total anger and frustration the entire time. He seems
to understand very well how important the procedure is and finds a way
to deal with it - his way works just fine thank you very much. Everyone
knew Ryan was in the room and everyone was VERY proud of how still he
remained. Way to go little Ry-Guy. We love you and are inspired by your
STRENGTH and COURAGE.
Ryan's Pop Pop (Grandpa) and Janelle arrived yesterday evening for a visit.
They are staying thru Wednesday and then Greg's brother Chris and his
wife Angie are coming to stay for a couple of days. Ryan is VERY excited
to see them all and is ready to have lots of fun playing and showing everyone
around the "beach" apartment and the "beach" town
(beach because that's the explanation to Ryan of where they are - a spoonful
of sugar you know).
lesions have not yet begun to shrink and many of them are developing pustules
(sp?) and are becoming increasingly itchy for Ryan. The hope is that the
radiation with the electron boost will wipe them out or at least reduce
them and stop the spread (yes, they are still spreading). The goal is
to get the cancer's activity supressed to get them to the next important
step - stem cell/bone marrow transplant.
this end.....PLEASE PRAY and HOPE for this outcome.
p.s. they now have e-mail access so, e-mail your words of encouragement
Support Team UPDATE (Sunday Morning 1/23)...
stem cell transplant at Duke is on hold for now.
arrival to Durham, NC last Saturday, Ryan has digressed considerably.
Lesions began developing on his skin the day they arrived and have now
spread to his entire body and head. He has been undergoing addt’l
chemotherapy using Fludaradine the last three days at Duke. Unfortunately
the lesions have not been affected and are actually spreading and getting
worse. This is a considerable step backwards as the chemotherapy is not
They are not checked into the hospital. Everything is being done on an
outpatient basis and they return daily to the comforts of their apartment
in Durham, NC (just a few minutes from Duke).
last week his energy level has been steadily declining and he has developed
a severe limp in his right leg as well. He is in good spirits despite
the changes to his body. In fact, they had a little bit of snow this past
Wednesday and Ryan, Lori & Greg all went outside to enjoy the first
snow of 2005. They caught snowflakes on their tongues and had a blast!
Needless to say though, Lori & Greg are privately devastated by the
turn of events. Ryan is noticing the changes but is not fully aware of
medically is the fact that he is now suffering from severe headaches (a
scary sign that the cancer may be back in his central nervous system again).
The doctors (all the specialists including the Duke, NY, and Fairfax doctors)
are all conferring on the game plan. The transplant is technically not
been cancelled but, depending on the outcome of the results from a spinal
tap today (Sunday), may be postponed. He is to begin craneal and spinal
radiation starting Monday with a low-level electron boost (specifically
for the skin) in the hopes that it will stop the progression of the disease.
If after two days of the radiation treatment it does not clear/lessen
the progression of the lesions then the bone marrow transplant will be
delayed in order to find an alternative therapy to treat the lymphoma
and get it under control. This will involve leaving Duke to go back to
Fairfax or perhaps to New York to get treated by the nation's leading
specialist in large cell lymphoma.
is that the alternative therapy will reduce the numbers of lesions and
stop the progression of the disease so they can return to Duke and proceed
with the bone marrow transplant.
The goal over the next few days is to control any pain he has, proceed
with the radiation, and hope the headaches don't get worse or that the
side effects from radiation don't get too bad.
Also, given these turn of events, it’s VERY difficult for them to
talk to anyone right now so PLEASE don’t take it personally if they
aren't calling you back. They ABSOLUTELY know that you’re pulling
for them and they DO hear your voice messages and enjoy the positive words
of love and support. Also, they don't have internet access yet and desperately
want to read your e-mails. We are taking steps to get those messages to
them by printouts delivered by FedEx until the get e-mail access.
This is definitely
the toughest part of their journey thus far.
PRAY and HOPE for Ryan & Family
We will keep
you posted as soon as we know more.
- 5pm on Sunday
The test results are back already from today's spinal tap...they are negative
for any signs of cancer. That means that Ryan's central nervous system
does not show any lymphoma cancer.
Needless to say Lori & Greg are happy with the results but equally
perplexed and cautious. The doctors seem to be baffled as well. Now they
must determine the cause of the headaches.
UPDATE (Mon. Jan.17th)....
Ryan, Lori & Greg arrived safely to Raleigh, NC on Sunday
(16th) around 5pm. The apartment is very nice and there are lots of great
amenities in the area (restaurants, stores, Starbucks!)
9 to January 15, 2005:
Bottle it up
If only there was some way to bottle up Ryan's happiness and enthusiasm
for life from this past week - we would have an endless supply of joy
at our fingertips.
We're taking Ry to Duke tomorrow. Whether we are there or here, we can
use our e-mail. I will keep the journal logs up to date as much as humanly
possible. We need your love and support to sustain us so keep the messages,
good thoughts and prayers coming.
This week Ryan underwent a hearing test, heart tests, kidney test, CT
scan of head, sinus, neck, chest, abdomen and MRI of brain in order to
get baseline tests prior to transplant. He also had several transfusions
of red blood cells and platelets. Last, but not least, he had one last
spinal tap with chemo injected into the spinal fluid to tide him over.
His counts recovered more quickly then last cycle despite getting a higher
dose of chemotherapy. He was no longer neutropenic beginning Thursday.
He is happy, strong and energetic.
I wish I had the energy to give you a glimpse into his good humor and
happiness - but unfortunately I am tapped out from trying to get it all
together before the transplant. In many ways I am blissfully exhausted.
I have said many times that Ryan is my barometer - when he feels good,
I feel good. I have been joyful the last few weeks. I consider them the
best weeks of my life to date.
We hope you stay warm and safe until our return.
January 1, 2005 to January 8, 2005:
Happy New Year!
So we're all in agreement: 2005 is our year! We are going to get new clean
cells for Ryan and he will be on his way to complete recovery. Evan will
continue to flourish and keep us all very busy. Greg and I will find a
few moments to spend together reveling in our victory. Fortitudine Vincimus.
The First Week of 2005:
We rang in the New Year at the Hospital with a dose of Ara-C for Ryan.
His hemoglobin was low at 7.9 - and without the red blood cells, his energy
diminishes. Having said that, he was very active during the day - riding
the mini drag racing car up and down the hall, creating a mess in the
playroom (what else are playrooms for?), racing his remote control electric
car all over the room and playing games with the nurses. He especially
enjoyed all the kisses from Vivienne despite his constant comments of
"YUCK!" Greg and I quietly celebrated the New Year and watched
the ball drop on t.v. as Ryan slept peacefully in the hospital bed next
For the first day of 2005, Ry got more Ara-C and a big ole shot of PEG
Asparaginase. He was so incredibly brave. He made no efforts to prevent
the shot although he was told it is one that will hurt a lot. He sat quietly
and still, only telling us that he was scared. He also got a blood transfusion
- our directed donors (people on our B+ blood list that go in regularly
to give blood for Ryan) at work already in the new year. The great news:
Ry was discharged. Home on the first day of the year - not bad.
The week went smashingly. He was playful and energetic. We squeezed in
a visit with Ben at the beginning of the week right after an appointment
showing that he was not yet neutropenic. They played with power rangers,
watched t.v., played on a swingset - both swinging as high as the trees.
I try to prepare Ryan for Duke because I don't want to sell it only as
an adventure. He will think we deceived him when his skin is crawling
from the burns caused by the radiation and his mouth, throat and stomach
develop those awful sores from chemo and radiation. I need him to be somewhat
aware of what is going on. Several times I have had a little chat with
him explaining that we are going to Duke to get rid of the bad guys in
him once and for all. I told him that the battle will be strong inside
of him and that sometimes he will not feel well. I told him that he will
get better and we will do everything we can to help him feel okay even
when he feels yucky. I told him that we love him every second of every
day and I want him to always remember that.
Sometimes I think he is slightly paying attention and sometimes I am quite
certain he ignores me. Much to my surprise, at the doctor's office this
past week, he carried on a conversation with Chassity and her mom outside
of my presence. It was about Duke. Out of the blue, he told them that
he is not going to Duke yet. He told them that his parents are not happy
about it. This information was not even part of our "chat."
The lesson: he listens and is always listening and picking up on cues.
I never once told him I was unhappy about the delay. I wasn't even sure
he understood we were supposed to already be there.
Maybe the delay helped lift his spirits this past week. He has been delightful
and cheerful and even thoroughly enjoying our company. Visits to the doctor's
office have become special outings and a chance to see friends.
With the high dose Ara-C, Ryan is not producing his own platelets and
hemoglobin, so transfusions were a given this past week and expected in
the next. In order to prepare for Duke, Ryan has a full plate over the
next 2 weeks.
First and foremost, he needs to get there disease free and infection free.
The disease part we have no control over but the infection part we have
a little control over. Since many infections come from bacteria that live
on and in his body and take advantage of his low immune system, we do
not have but so much control. For the part we do have, we continue to
keep him somewhat isolated from the real world. Since he is feeling so
good and energetic, the task is a little difficult. But for Greg and I:
we are eating up every good moment.
As prep work for Duke, Ry needs a dental check up, eye exam, heart work
up with EKG and echo, hearing test, CT of brain, sinus, neck, chest &
abdomen, MRI of brain and kidney function tests. The tests are to make
sure that the disease is gone, get a baseline, and make sure he is not
starting off with any obvious problems or infections.
He successfully had his dental and eye exams without incident this past
week. The rest are scheduled for next week. The scans are tentatively
scheduled for Friday because they need to be done when his counts recover
in order to get the best reading of what is going on in his body. Friday
is really our kick off day. His ANC count needs to be at least 500. Not
surprisingly, his counts were 0 for much of this past week.
If things are a-go on Friday, he will also have one last spinal tap and
triple intrathecal chemo to tide him over until treatment begins at Duke.
Except for the 0 ANC count (and our faith in the fabulous nurses at Fairfax),
Greg and I would think that they forgot to put the chemo into the bags
at the hospital. Outside of his completely suppressed immune system, he
shows almost no outward signs of the toxic drugs. His only complaint continues
to be his bottom - bless his little coondangee (Korean for bottom).
He is a wild man - especially revving up when Greg and I are nearly comatose
at the end of the day. No idea where his energy comes from- at about 8
pm, he gets a second wind. We struggle to get him to sleep. It appears
to be some sort of side effect - and I say that because it makes no sense
otherwise. An extreme hunger kicks in around 10 pm. Most nights I find
myself taking a trip downstairs to pop open a can of sardines for a late
night snack. If only we could rent a good set of parents for him to cover
the night shift.
My work family continues to amaze me. Cindy and Dawn put together a Bingo
night in honor of Ryan. Although we were short a car this week, Jim trekked
to my house to pick me up to go to work. And Dan's devotion to me and
my Ryan's cause is never ending.
On other Holt boy news: Evan turned one this past Monday!! We had quite
the celebration on Sunday at Oma and Papa's house. Like Ryan's first birthday,
Evan made an initial appearance in his traditional Korean outfit. I learned
at the pediatrician that he is now 26 pounds - like I said, chubby and
happy. I personally blame Oma's good cooking.
Please continue to keep us in your thoughts and prayers. We appreciate
each and every one.