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Recent Entry thru May 2005...
July 18, 2007
inspired to write again in this journal. I have dearly missed all of you
and of course missed my sweet Ryan. I’d like to say that things
get easier every day but that would not be true. I have found the opposite
to be true. I am sure that those of you who talk to me or see me regularly
have no idea that dealing with Ryan’s death continues to get harder.
I do not walk around in a daze or depressed. I do not act as if today
is dooms day. I do not voice complaints about how unfair life has been
to me. I do not appear angry or mean or bitter. And it is not because
there is a thin veneer of practiced smiles layered on top of pain. I am
happy. I do find joy each and every day. I embrace life and its joys more
than I did before Ryan was sick. I think I owe that to him. But the pain
associated with the loss of Ryan grows.
I think I
can identify some concrete reasons why life without Ryan is more difficult
as the days pass. I wonder what he would look like two years after he
left us. What traces would there be of the toll the drugs took on his
body? As his 7th birthday approaches, I wonder if he would be playing
baseball or still enjoying Pokemon. His touch is farther and farther out
of my grasp. I can’t feel him anymore. Occasionally I squint to
see the features of his face clearly. The wisdom and kindness he showered
on us can no longer be heard or enjoyed. His brother remembers very little,
if anything, about him. In fact, Evan’s memories of Ry are being
supplied by us. These things only get more exaggerated and compound over
I spoke to a group of families and loved ones of children who had passed
away. It was somewhat overwhelming to look at all the faces and know that
they, too, face battles behind closed doors on a daily basis. It is often
a silent pain. I read a poem by Khalil Gilbran called On Joy and Sorrow
to describe the grief that is felt from losing a child. The poem talks
about how one’s greatest joys are derived directly from one’s
greatest sorrows. Without that sorrow, you would not feel that immense
joy (and vice versa). I remember the complete joy we felt during Ry’s
treatment when we were with him. Despite the fact that he was suffering,
he smiled and we smiled; he loved and we loved; he lived and we lived.
I would not have experienced such great joy but for the sorrow and nor
would have I experienced such great sorrow but for the tremendous joy.
The two emotions side by side allow you to feel each emotion to the extreme.
As time passes
by, I have occasionally (I could probably say regularly) felt like a failure.
Not so much because we did not accomplish the ultimate goal of saving
him - although that has certainly entered into my mind - but more because
I had assumed I would have set something up in his honor to help others
similarly situated to him. For some reason I have been paralyzed in getting
anything actually going. I feel overwhelmed at the prospect. I have mentioned
before in this journal that Greg and I intend to set up some sort of foundation
to provide toys and gifts to sick children. I do not consider myself materialistic
but I have a strong opinion that children whose immune systems are too
weak to allow them to play regularly with other children or do activities
that well children could do should be given every opportunity to smile
and enjoy life. They are often too weak to run boundlessly or their platelets
are too low to let them participate in contact sports or even go sledding
on a snowy day. They can’t risk being around other children when
they have no white blood cells to fight off infection in fear of contracting
a regular everyday virus that has a very real possibility of taking an
immuno compromised child’s life. I have no shame in saying I think
we should shower these children with toys and gifts.
A few days
ago my friends at work brain stormed for a way to honor Ryan on his 7th
birthday. They conspired outside of my presence to develop a flyer requesting
that toys be donated in Ryan’s honor which will be delivered to
his old doctor’s office on his birthday. I won’t even try
to describe for you how overwhelmed and grateful and proud and humbled
I felt by their kind deed. It is exactly the thing that I was wanting
to do myself but couldn’t muster up the energy. Ryan turns 7 on
July 31. Please join all of us and buy a new toy for a child who is sick.
The toy needs to be new so that there are no concerns about germs - not
to mention it’s nice to open a new toy. See if you can get a few
friends or neighbors to donate a toy with you. Call your local hospital
and ask for the Child Life department or the pediatric oncology ward,
or call a local pediatric oncology office and ask to whom and how you
can deliver the toys. E-mail me and let me know about it. If you are nearby
here in Northern Virginia, you can drop them off and we can take them
for you. Let me know if you want more information as to where to take
the toy. Ryan may be gone but there are more and more kids to replace
him in the oncology office. He would be so honored and pleased to see
you bringing a smile to another child.
family and friends will be meeting again at Ryan’s grave side to
honor him on his birthday. We will be re-telling our favorite memories
and stories about Ryan. We will laugh and we will cry. Thank you for still
Exploring my feelings becomes more difficult as the days increase since
Ryan's beautiful life ended. I am still strong. I am still happy. Yet
a profound sadness invades my being without warning. To be around me,
you would not know the sadness that brews inside. I am sure strangers
have no idea that I lost my very special son. And it is not by design
- I do not intentionally wear a mask. This journal gives me the opportunity
to explore those feelings I do not share out loud. I hope it also serves
as a vehicle to educate those out there trying to support others who have
lost loved ones. Maybe my experience can give you insight into what really
goes on inside one's heart and soul after losing someone so special and
I want to
continue to write in this journal. The reasons vary. On a basic level,
I need it. On a larger scale, I want an audience to reach when I figure
out how I want to give back to help other children with cancer. Greg and
I have so many ideas of how we can make the lives of children with cancer
better. I have such a great network through this website and I want to
utilize it when we are ready to go into action with our plans. And last
- if I can be so presumptuous - I write to make sure everyone checks their
priorities on a regular basis.
I think about
the purpose of my journal before. It was to make a medical history. It
was to vent. It was to reach out. It was to get support. It was to make
a diary for Ryan and recount funny and embarrassing stories at the opportune
times like his wedding. It was to make a book for Ryan when he was older
and could read about his own experience, his courage and the road we all
traveled to get him well.
before his death all included medical news about Ryan and special stories
about his courage, his sweet spirit, and his imaginative playfulness.
It was fun for me to write about and record his personality. It was fun
for me - and I think fun for those out there reading. It allowed others
to be connected with the status of his treatment. For me, that aspect
was huge. My support system was but a phone call away and up to speed.
I remember when Ry relapsed and we were considering a donor transplant.
Fairfax doesn't handle donor transplants. My friend Kim immediately went
into action and pulled together a notebook with at least 6 facilities
to interview about their program. No one has ever had so much support
- I am sure of it. Ry had it all going for him. Greg and I catch ourselves
wondering how or why it didn't work. So many kids have so much less. Ryan
had such a loving, persistent and devoted team.
I think my
journal also gave others true insight into what types of struggles and
challenges face families that were caring for a sick child. I hope that
it has inspired others to reach out and care for each other. I hope that
it has provided a reason for those able to contribute financially to the
cause to do so - whether it was for a particular person or for the Leukemia
& Lymphoma Society or other cancer group or an organization like Growing
Hope. And most desperately I hope that his death will not put an end to
that desire. It is needed more now than ever.
I know in
some of my words you can hear my pain. I want to be able to reassure you
and say that I have no pain - and I can't do that. I can, however, tell
you that if you were to see me on the street - I would smile. I would
ask you sincerely how you were doing and how your family is doing. I am
able to concentrate on my work when I am there - and enjoy it. This I
can reassure you about. This journal disproportionately emphasizes the
loss in our lives. And I need it to. I have no other outlet.
my advice be in dealing with me or others in my shoes? For us, the letters,
cards and e-mails that come mean the most. The specific comments about
favorite memories of Ryan touch us most deeply. The acknowledgment that
we had an incredible run with him - as short as it was - provides comfort.
The promise to remember and honor him - whether through volunteer work,
donating blood or contributing to the cause - is huge.
it hits me that I have no new material - no new stories about the Ry-guy.
And for that I am intensely sad. I want to tell you about what he did
yesterday. I want to tell you about his Halloween costume. I want to tell
you about his latest scan. I want to tell you about the future treatment
- and happily - I find myself with new material. I went to the Ceremony
of Remembrance last week. It is the service held at the hospital for children
who have passed away at the hospital whether from cancer or premature
birth complications or trauma or any other cause. There is a reception
and speakers to include a nurse, a doctor and child life specialist. The
name of each child who has passed away is read and people who had a special
connection with that child are invited up to light a candle in his or
her honor. It was a moving celebration for the many children who passed
reception I had a conversation with Ashley, a care giver at the hospital.
She told me of a time when she had to get a sample of Ryan's urine because
he was getting chemo and they needed to test it. She stuck the vial filled
with 1 cc of his urine in her pocket. She promptly forgot about it. But
she didn't forget about the Skittles in her pocket. She began nibbling
on the Skittles and eventually noticed that they were bleeding. She examined
her pocket and saw the vial - now empty - in her pocket. She freaked.
She immediately consulted the doctor on the floor who reassured her that
while it was not a terribly good thing, it would not kill her. Well, Ashley
made her way back in to Ryan's room eventually. And when she went in,
she said, "Ry, wanna hear something gross?" She described him
watching t.v. while laying on the bed in his usual position - one leg
bent with the foot flat on the bed and the other leg draped over bent
leg's knee with his foot wagging. He answered sort-of nonchalantly that
he would like to hear something gross. After Ashley told him the story,
he didn't really respond - finding the entertainment better on the t.v.
She asked if he thought it was gross and he just said, "Yea."
Not sure if he was really paying attention, she headed for the door. Just
as she was pulling the door open, Ry said in a really understated tone,
"Hope your hair doesn't fall out." Such comedic timing. And
Oh how I miss his dry wit.
We met a
few weeks ago with Dr. Perdahl regarding the autopsy of Ry. While there
was nothing medically shocking, I was actually surprised at the conclusions.
The initial diagnosis and the statement on the death certificate indicate
that he died from sepsis. That is not the case. And frankly it didn't
make much sense to me. I had a slew of questions prepared because I needed
to understand how it could be sepsis. I guess my thirst for knowledge
when it comes to Ryan's body continues to thrive.
In any event,
the reason Ry died was because his heart gave out. That is not the medical
terminology but that's what it boils down to. When they looked at his
heart, they saw that the vessels were leaking blood. The heart was not
strong enough to keep pumping. There was absolutely no sign of infection
(viral, bacterial or fungal) or cancer. Nor was there any other thing
found to cause or contribute to his death. The positive test for the bacterial
infection 10 days prior to his death certainly did not help his heart
and might have contributed to the rapid deterioration but was not the
cause nor a definitive factor or contributor. The autopsy thus proved
that he did not have sepsis.
many heart tests performed in the immediate few weeks before his death.
They all gave us (doctors and Greg and me) a false sense of security.
The official definitive cause of death was hemorrhagic myocarditis. The
medical definition of hemorrhagic is a copious discharge of blood from
the blood vessels and myocarditis is the inflammation of the heart. Essentially,
the treatment fatally damaged his heart. The direct cause of the heart
failure is the severe treatment for his aggressive refractory (refractory
is the term when a patient relapses while in treatment and never made
it out of treatment for any period of time) lymphoma. From the initial
chemotherapy to include Adriamycin (known to cause heart damage) to total
body radiation in preparation for unrelated cord blood transplant to more
chemotherapy treatment right after transplant - his heart was severely
We knew that
the treatment was very dangerous - we just had no choice. His cancer was
too abusive. We also had his heart checked regularly with a pediatric
cardiologist. In response to our question how we could have learned of
the perilous state of his heart when it was happening, we were told that
a cardiac catheter could have shown the severe damage to the heart. It
is not the standard of practice in the pediatric cardiology field - meaning,
the tests that are normally run and had been run on Ryan are considered
reliable means to determine the damage to the heart and the procedure
to place a catheter directly in the heart is not generally considered
as an option. It has its risks as well. Ryan's oncologist thinks they
will push for the procedure in the future for kids who have similar symptoms
and have suffered through the aggressive treatment like Ry.
they have done had they realized the precarious state of his heart? One
recommendation would have been to stop chemotherapy and put him on heart
medicines. His heart was in such bad shape that this route would not necessarily
have reversed the damage or stopped his death. There was also no good
reason to believe that cancer would have not come back if we stopped chemo.
A Hopson's Choice that we were never in the position to make - and I'm
grateful I never had to make such a monumental decision yet desperately
sad that I never got the chance.
hero passed away on the 18th of November. A 17 year old by the name of
James died after battling testicular cancer for a year. He was a soft
quiet and gentle soul. Other kids were drawn to him and he lead by example.
At the funeral, I was immensely touched by a young girls comments to the
congregation. She was probably 13 years old. Her family is close with
James' family and she considered him to be an older brother. On the evening
when James passed away, she returned from the cafeteria in the hospital
to discover everyone crying in the hallway. She said she saw them crying
and didn't know what to do so she cried. It was such a pure honest outpour
of emotion. I was struck at how she, James' brothers, and James' classmates
were all so young to be confronted with such heavy issues. James was a
great example to all the kids - in death and in life. So long as the kids
had to be exposed to early death and death by cancer, I am glad they have
James to emulate.
I find myself
for the 3rd year searching for answers to the question, "What am
I thankful for this year?" And I surprise myself that I am not empty
handed. This journey with Ryan has shown me the true goodness of humankind.
And the true support comes from everyday folks who make time in their
busy lives to help a friend or even stranger. It's the police officer
who regularly donates blood; it's the paralegals who host a bingo night
to help finance living expenses in Duke; it's the family of 6 who tirelessly
and endlessly supply support through Ryan's website and countless deeds;
it's the neighbor who while on vacation in Disney thinks of Ry and buys
him Star Wars figures; it's the hot meals by friends and strangers; and
it's the young lady who sings her heart out at Ryan's funeral. And I am
not even scratching the surface.
And now I
have a good Thanksgiving story to share. A friend of mine through the
website let me know about a large contribution she was sending to Growing
Hope. She told me how her husband had a dispute with another person over
some money that was owed. Both parties had dug their heels in and it appeared
there was no room to compromise. A mutual friend of the two disputing
friends decided to try to mediate to help them avoid a lawsuit. My friend's
husband arrived early at the restaurant where the meeting was to take
place. Mulling over the situation over a cocktail, an idea - maybe even
an inspiration - came over him. The other 2 met him and he announced his
new position. He told the person he was in the dispute with that she owed
the money - but while it was owed to him - it didn't have to be paid to
him. He told her of a brave warrior named Ryan. He told her about the
organization that makes other brave warriors days a little brighter. There
was no discussion or negotiation - a check was written for the full amount
to Growing Hope.
by this story, the power of the special kids who have fought so valiantly
against cancer and other illnesses - and specifically Ryan's magic - continues
to make a tremendous impact on those of us still here on earth. For that
I am thankful. There is a simple beauty in the resolution of the feuding
friends that defines Thanksgiving.
I really want to set up some sort of organization which will enrich the
lives of children with cancer. One idea is to purchase a beach house that
is available to the kids in treatment. Another idea is to have toys available
for the kids in treatment. Our goal - do anything to make a child in treatment
smile. We are not in a financial position to pull off the beach house
thing but it's a good long term goal. We also intend to participate in
the Leukemia & Lymphoma events to raise money for a cure. Ultimately,
we want to set up something that will honor Ryan, keep his memory alive
and benefit children with cancer.
to continue to need you to lend us emotional support and help us get our
other ideas off the ground. Without this journal and without its readers,
I would feel much more alone. From the bottom of my heart, I am thankful
and grateful to you all.
and Happy Thanksgiving,
A Love Affair
and I had a love affair with Ryan for nearly 6 years. He was 5 when he
passed away but it started before birth. I remember when I was pregnant
- I brought him with me everywhere - naturally since he was attached to
my body. But when he got to a point where I could feel him moving, I began
talking to him regularly. He went on trips with me for work; he went shopping
with me; he played with me. I played Mozart and Bach in the car - it was
soothing and the latest trend claimed it might help his brain development.
him. We did our best to make his life happy and comfortable. And his little
antics and sweet spirit made us smile day after day. I wouldn't be human
if I didn't ask "Why?" now and again. Why did he have to have
so much unpleasantness in his sweet life? So many moments filled with
pain - first from chemotherapy - he looked up at us with those trusting
eyes and wanted to know why we let him feel so awful. Some moments these
thoughts haunt us. Far worse was the pain he had when he relapsed a year
ago from now. The cancer had gotten into his central nervous system. The
excruciating pain in his head from cancer pressing on the spinal fluid
around his brain was unbearable to witness. When cancer first invaded
Ry's body it was just about everywhere except the central nervous system
- but it didn't make him feel bad. Although it would have if he did not
get treatment - he was just starting over the last week before his admission
into the hospital to have trouble breathing. But he had cancer for at
least 3 months before he was diagnosed. The tumor that was believed simply
to be an enlarged lymph node on the back of his neck that is common in
childhood was actually a cancer filled tumor. It was checked and re-checked
for several months. It wasn't until the week before he was admitted to
the hospital on an emergency basis that the lymph nodes all over his body
began to pop out. The ones that were most disconcerting were those under
his chin that appeared 2 days before his first admission to the hospital
- hence the restriction to his airway and difficulty in breathing.
was diagnosed with cancer, we took care of him like a precious delicate
artifact. We did everything possible to make him comfortable. We lived
for each smile. We winced when he winced with pain. We celebrated the
moment when the moment was good.
I have combed
the pictures of months preceding his death. None look like him to me.
The pictures immediately following the Duke trip have barely any resemblance
to him because of the effects of the drugs - his face is so puffy and
misshapen. And even so I thought he was adorable - but it just didn't
look like him. The really recent ones show how weak he was getting. I
knew we were going to go through rough times to get to the good times
but I never really thought he wasn't going to make it to the blissful
good times of growing up normal and cancer free. We were not ready to
end the love affair - and nor will we ever be.
have learned a lot about grieving. His death will never be put behind
us - it is not something you "get over." It is a life defining
event that we will find a way to adapt to. It is a bright line in our
lives. Everything is before and after. I learned this phenomenon first
when my dad passed away and again when my mom passed away. I relate on
a daily basis to: that was before Ryan's death and that was after Ryan's
death. There is an almost obsession to the details of the last week or
few weeks leading up to the minutes before his death. Sometimes the thoughts
bring comfort (no suffering in the moments before death) and sometimes
they bring sadness (when he asked Greg 2 days before he died if he felt
rotten because the bad guys were doing it) or a combination of the two
(thinking of his spunky spirit asking for me to massage his back forever
only 12 hours before he died or telling Karen Kelly to stop holding his
soda bottle when it was balanced on his chest precariously while he sipped
from a straw through the opening in his mouth that he shared with a tube
only 2 days before he died).
I found an
incredible book that I have asked some of my friends to read to understand
what we are going through and help us through these times. It is called
When the Bough Breaks. I recommend it to anyone who is sadly in our shoes
or who knows someone who is.
that the best thing someone can do or say is to talk about your child.
To tell me your favorite memory - whether it was one you know by way of
a story in one of my web journals or it was one that you created or witnessed
in person. I have a friend that knew Ryan only through the website. She
sent a card with a note that I replay in my head time and time again.
It said simply this: My favorite memory of Ryan was when he went to the
Star Wars premiere. My favorite picture is the one with his arm around
Evan on the balcony.
Some of you
were close to him because of your relationship to me or Greg. Your memories
are so important to me as well. I don't want those memories to slip away
because you don't know when or how to express them to us. On a special
day - like Christmas or his birthday - it would be wonderful to receive
a note telling me one of those memories.
It is never
too late for anyone to tell us how Ryan affected you and your life. I
read my e-mails everyday. I got a card this week that said how sorry that
person was for not sending a card earlier - and to tell you the truth
the last thing I would have thought is that it was belated. How nice it
was to be thought of a month and half from his death. In fact, immediately
after his death our mailbox was filled with cards - now we might get one
every few days. E-mails have dwindled to one here and there rather than
countless each day. I miss them. How very recent it still is from his
death. A month and a half is nothing - I'm hoping to get cards and notes
in ten and a half years. That's when he is at risk of being forgotten.
Not by us but by those that move on in their own lives. When someone asks
how many children I have - what am I to say? I gave birth to two - I loved
two. He existed - and in such a very real and impressive way.
I think some
people think it is inappropriate to show us that they feel sad about his
death - to cry in front of us - to tell us how much they miss him. The
opposite is quite the truth. To know that someone else loved him deeply
- so deeply that it affects their mood and their life - is incredibly
beautiful and tragically comforting.
I have loved
comments about the service and the celebration of his life. It sounds
so strange but I like to know what people liked best. Was it Molly Sinnott
singing (my personal favorite) or something I said or the fact he is buried
on top of my mother or the slide show or the releasing of balloons at
the reception? Let me comment on Molly again: she called me and asked
if she could sing at Ryan's service - she is one of my closest friends
(Mary Conlon Sinnott) daughters - she is brave - she is poised beyond
her years - she was 11 or just turned 12 when she stood before that entire
congregation and sang such moving and meaningful songs. I strain my ears
sometimes to hear that voice and those songs - the Phil Collins song especially
touches me: You'll be in My Heart.
gesture came from two separate moms - they each took one of their children
to visit Ryan's grave. I can't begin to describe how special that is.
One left a little pumpkin for him at the site - and they both shared their
experience with me. I was so happy to know that he had visitors - and
especially children. One was his best buddy at Jackie's house: Jeremiah
- Ryan's first friend in the world. Are there any words to describe what
a beautiful gift that was to me and Ryan?
First Attempts to Adapt
the last update, we have begun the adaptation process - the lifelong process.
The day after the funeral Greg knocked down a wall between the kitchen
and dining room. He had warned me that he was going to do it. We had talked
about it for a couple years. I'm not sure I believed him but sure enough,
Thursday morning, I hear the banging of a hammer. I'm sure it made him
feel good. It has also been a great distraction for us. Although ideally
we would have planned this better - we are now in the middle of big home
projects. We're going to do them all ourselves - with the help of some
handy friends - and so we employ an old coping mechanism of occupying
much of our free time.
We did make
it to the beach. It was peaceful. It was relaxing. It was a time of reflection.
It was a time to enjoy crazy energetic Evan. But it was lonely and empty
as well. I am glad we went - we needed to do it but the void from Ryan's
death was always present.
It was interesting
to really notice the differences between Evan and Ryan. Evan is fearless
when it comes to water and Ry would barely get his toes wet. Evan is a
planes, trains and automobiles kind of kid - Ry couldn't care less about
the moving vehicles but loved little figures whether they were animals
or power rangers or pokemon. Ryan listened so well - Evan needs improvement.
Both lovable but both so different. And it is as it should be - they are
not clones nor would I want them to be - but the difference emphasizes
what we are missing with Ry. I want both - call me selfish. They both
would have enjoyed the beach tremendously - just in different ways.
seashells to put on Ryan's grave. Ryan loved necklaces and bracelets.
There was a time that he wore about 10 or more of the Live Strong type
bracelets on his ankles. He had one for just about every cause. He loved
them. He also got a shark necklace for his birthday that he loved and
a couple seashell type necklaces from Virginia Beach on his last vacation.
At the end of September Greg and I went to Baltimore to celebrate our
anniversary and found a necklace Ry had been looking for - a necklace
with a crab on it. We got it for him.
and I are finding work to be a good distraction. We enjoy what we do and
the days aren't aimless. There's a built-in structure with work that keeps
us moving even when me might not otherwise feel like it.
desperately want to hold on to memories from the last 5 years. The best
way to do it is memorialize it on one of these web pages.
me of a couple of his favorite memories and I will attempt to put those
in words so they will live on for eternity. One day when Chris and Angie
were watching Ry for us, he tried to convince them that mom would have
let him eat frozen chicken nuggets - not cooked but frozen. He did have
a strange taste of food. Did I ever tell you he used to eat dog bones,
fish food and chapstick? That's not to mention the sardines and slim jims.
Back to the nugget story - when they did put them in the microwave over
Ryan's objections, Ry ran around turning off lights, the t.v. and the
portable heater. When they asked him what he was doing, he told them that
the lights go off when the microwave gets turned on. What's interesting
about that story is that I didn't realize he put that all together. Our
microwave is not on its own circuit. When we turn it on, if we have certain
lights on or the t.v. or the little heater, the circuit blows. I never
knew he connected all the dots. He was never asked to turn stuff off when
we used the microwave. Amazing little sponges, aren't they?
did this work-out tape before Ry got sick and even less frequently after
he got sick. I remember him asking me to work out and sweetly telling
me I should do my work out tapes. I don't know why but I got a kick out
of that. In the early morning hours over the last couple weeks I've tried
to drag my body out of bed early to attempt to start doing these tapes
again. Several mornings I was more interested in hitting the snooze button
- and would have prior to Ry's death - but I got up because I heard Ry's
little voice encouraging me.
roaming the halls of 5200 at Duke Hospital. When Ry was trying to get
his strength back and use his legs again he used to ride that bike, remember?
Well, to understand this story, you have to know what "the backs"
are. "The backs" are the back of a box that a toy came in -
it has essentially advertisements for more toys like the one in the box.
Ry loved these backs. He had us save them all. He would stare at them
for hours. Back to the bicycle: when his best buddy Tori would visit,
she would follow him up and down the halls holding a "back"
in front of his face so he had something to concentrate on while forcing
those little legs to build up muscle strength and propel the bike down
I think about
days before he was sick. What were his main interests? He loved the t.v.
show Stanley and his great big book of everything. He loved the episode
with the anteater and I can see him sticking out his tongue pretending
to slurp up some ants. I'd say his favorite book was The Very Busy Spider.
I read it to him almost every night before he went to bed. When he was
not yet 2 he would imitate me and join in like it was a chorus, "But
the spider was very busy." He loved Blue's Clues and watched the
submarine episode over and over. We would rewind the part with the fish
that were hiding and point out on the screen where they were hiding as
if they may have moved since the last time we watched.
to wear costumes. He had all the costume pajamas - probably 3 of each
- spiderman with the wings and cape, superman, batman, power rangers.
He and Ben would often wear their spiderman or superman p.j.s at the same
time and jump off the bed together. He had a bed with a slide right before
he was diagnosed. It was put in storage when we were in the hospital the
first time for a couple months. Underneath the bed (it was a loft bed)
was a fortress. Many nights after reading a book he would ask me or Greg
to lay down underneath there until he fell asleep. I had many nights when
I woke up under there realizing I too had fallen asleep. He loved to collect
regular costumes as well - Power Rangers of all kinds like Space, Light
Speed Rescue, Dino Thunder, Ninja Storm and he had an Anakin, Ninja Turtle
and Harry Potter costume too. Halloween was a tough holiday for us. When
he was 3, he went to Boo at the Zoo which was a week before Halloween.
It was that Halloween - on the 31 st of October that he was first hospitalized
with the enlarged lymph nodes. We didn't leave until into December. He
missed that Halloween but did get to wear his costumes at Boo at the Zoo.
In fact, he was a Ninja Turtle but brought his blue Ninja Storm Power
Ranger costume and changed half way through. Last Halloween when he was
4, he had a really cool red Triassic Dino Thunder Power Ranger costume.
Again, he relapsed in October and we hung the costume on the door in the
hospital room but he never put it on. That is, until many months later
when he played dress up.
helped create our vision for decorating his room at Duke by making a poster
of Ry wearing a Power Ranger costume. He was in a Power Ranger pose and
looked so strong and powerful. I also wanted a wrapping paper type poster
for the outside of his hospital room to mark his door. I explained it
to the Sochas and they made the most incredible thing - it was alternating
pictures of Ry in a Spiderman costume - one with the full mask on and
one without - which repeated over and over. His door and room were by
far the best on the hall - rivaled by no other.
miss those Pokemon battles between Ry and Greg. I have tried to replay
some in my head lately. I want to be able to hear his voice call out the
Pokemon he had chosen for the battle followed by Greg announcing his Pokemon
choice. Then Ry would call out the command to his Pokemon to use the power
he knew was unique to that Pokemon. Maybe it would be a grass type Pokemon,
and he might say - "I choose you, Bulbasaur." After that Greg
might choose Pikachu - the one Ry almost always gave him. And then Ry
would tell Bulbasaur to use one of his attacks like Vine Whip. Greg would
do the same - maybe telling Pikachu to use Thunder Bolt - and then the
two would clash - again and again - Ry calling out an attack or defense
and Greg doing the same - until one of the Pokemon fainted and had to
return to his Pokeball to recover. Of course most often some of Ry's were
still standing. He knew all the powers and attacks and defenses of each
Pokemon - consider that each Pokemon had 20 attacks and defenses and there
were well over 250 Pokemon - and they keep adding more over the years.
countless battles at the doctor's office, in the Duke apartment, on 5200
at Duke Hospital and in every nook and cranny of our house - to include
the bathtub and all bedrooms, couches, tables and floors. I can't tell
you how many hours the Pokemon site would be up on our computer. For hours
and hours Ry would sort thru the Pokemon on the Pokedex (index of Pokemon).
He also wore the pages on his Pokemon book. By far his favorite book over
the last year.
I can see
him running around the house before transplant with Karen Kelly. Both
of them had some weapon in their hands - maybe light sabers - maybe Power
Ranger weapons. I can picture Karen falling flat on her face on the ground
in feigned defeat - and maybe sometimes actual defeat.
him over the last month. He seemed to be getting weaker. I remember how
happy he was when he got a care package with Cowboy stuff from Linda in
Texas. He donned the whole ensemble - hat, belt, gun and handcuffs - and
had a big old smile on his face. I can see him sitting on the chairs on
the carport. Every day he would want to sit out there and watch people
go by. He would want to just reminisce or play with his Pokemon or wait
for the mail or eat some slim jims. I so miss sitting out there with him.
results have come in. Greg is torn as to whether he wants to attend the
meeting to go over the results. He has not returned to the doctor's office
since Ry's death. I have been there twice to deliver donations to Growing
Hope and to visit with some friends. He's not sure he is ready to go there.
I totally understand. I need to go. It is an opportunity to discuss what
happened. I know it can't change anything but we have always sought all
the information. It is in that vein that I need the information. It will
be the first meeting that a game plan does not result from the meeting.
A game plan to make Ry better. It's just our last doctor's meeting about
I had to
have an MRI a couple weeks ago. The physical part of it was quite easy.
It was when I was in the machine and picturing Ry in so many like it that
I felt like crumbling. My insides were heavy and a lump in my throat wanted
to consume me. All the procedures went flashing before my eyes. All the
times that he had radiation, a PET scan, a surgery, a needle stuck in
his arm or leg, an x-ray, a CT, an MRI, a spinal tap, chemotherapy, transfusions
- all the times he had to swallow some nasty contrast before a scan. The
medicines he had to take. The endless, countless medicines - some that
tasted so bad that they would make you throw up.
his eternal sweet trusting spirit. His love of us. His love of friends
- big and small. I thank God every day that he did not whither away after
days and days of excruciating pain as many cancer patients have done.
I am grateful that he was not afraid. I am happy that we spent so much
quality time with him. I am glad that he doesn't have to endure any more
unpleasantness with treatment and the side effects from it.
As for helping the kids smile while at the clinic and undergoing treatment,
we have collected an tremendous amount of donations for Growing Hope.
My last entry has the direct mailing address if you wish to send it there
or you can still send it to me and I will forward it. The check should
be made payable to Growing Hope with Ryan Holt in the memo. If you want
to use paypal, please put Growing Hope in the memo and any other remarks
you'd like to make.
We are in the process of trying to figure out what to write on his marker
at the grave. What a big task. How do you define a life in a few short
lines. And especially his. I was coming up completely blank. And then
one day I sat down at the computer and saw some scribbles in Greg's writing
on a scrap piece of paper. It is perfect - we will live with it for a
while to see if it needs any tweaking - but it took my breath away.
touch that soothed our hearts -
A thoughtfulness that belied his youth -
A smile that gave hope -
A hero to everyone - Our Son
I feel like I may be talking to myself - which is fine - but also sad.
Even though my journal has been a great tool for me, I enjoyed knowing
that I had so many of you out there routing for us and praying for us.
It felt good. I now feel like I'm in a lecture hall speaking to an empty
room. I'm afraid it represents the new phase we are entering.
funeral and celebration of Ryan's life was fantastic. A strange word to
use when talking about a funeral for my sweet 5 year old son. It was the
celebration I wanted it to be.
told me that when she saw Greg and I proceed down the aisle behind the
casket at the start of the service, a piece of her died forever - and
that after my Eulogy, a piece of her was reborn. I guess that means I
did my job as Ryan's mom.
To me, the
most beautiful moments were during Molly Sinnott's solos. She sang Testify
to Love (Wynonna Judd) and You'll Be in My Heart (Phil Collins). I truly
think that she sang them better than the original artists. She did it
without any accompaniment. The symbolism of it all is what overwhelmed
me - a tribute by a child for a child. She was so poised and brave - just
like Ry during his battle. Molly contacted me to ask if she could sing
at his service - and said she would be honored to do so. No words could
have made a better tribute.
That's not to say that I didn't try. I spoke at length about Ry, his battle,
his courage, and the tremendous support we've had along the way. Greg
and I are committed to continue the fight against childhood cancer.
I told everyone
I had a lot to say and wanted to say it all because I wouldn't have an
opportunity to reconvene everyone. I had my captive audience and I attempted
to say it all. But I realize now that I have so much more to say. There
will never be enough time.
about the Ry-guy
I want to tell you how he loved having his feet massaged and his back
scratched. About 12 hours before he died he sighed in delight when I scratched
his back and he asked if I could do it forever. And I wanted to do it
forever. Lisa Barnett came to visit that night and he wanted her to rub
his belly. When it was getting late and he was sleepy, she left his side
to turn the music down and he said, "Ohhhh belly rubber - Oh Lisa."
She took the cue and made her way back to him to continue the belly rub.
tell you that when you slept next to him, he'd reach out for you to hold
your hand. And I forgot to mention that he loved to have a pink popsicle
when he had to take Niphetapine at the clinic for high blood pressure
- and that it was his nurse Caroline who discovered it and made it a ritual.
I never told you that he went to a pre-school type daycare for a few months
before he was diagnosed and he hated it. He would wake up in the morning
and say, "Where am I going?" If it was to hominy's house, he'd
rejoice. If it was school, I'd smile and say in my happiest voice - "to
school - it'll be so much fun." But he was always sad that he had
to go. He was so good. He always behaved well - in school and at home.
He was a rule follower. But the classroom setting was too rigid. He missed
his buddies at Jackie's. He liked the comfort of a home. He made friends
at school - even a best buddy named Dillon and the two were constantly
side by side - and all the girls loved him - I think they saw the sweetness
in him. Many days his Halmony would pick him up - and sometimes they would
both embrace and cry.
I'd try to soften the blow by making him his favorite breakfast - tubby
toast. We adopted the name from the Teletubbies and I made my version
of their toast. It was a circle that I cut from the insides of a piece
of toasted bread with a smiley face made out of cinnamon sugar on it.
I had moderate success in getting him to eat it which - with his appetite
- was phenomenal. Halmony has reminisced lately about how he told her
he loved Korean food. And he did. But we would be thrilled if he ate 2
tablespoons worth of food - before and after his diagnosis with cancer.
tell you about the picture he drew when he was 2 at Jackie's. Like most
kids that age, it was a bunch of scribbles on a page. Jackie asked him
to describe it so she could write down what it was on the page. He told
her, "Tiger pooping in the grass." Two of his favorite topics:
tigers and pooping. I didn't mention his fondness for video games - and
that he liked his dad to play them while he did something else nearby.
Ry would entertain himself with his Pokemon figures or some other little
figures and use his imagination to make them come alive. Simultaneously,
he wanted Greg to play Pac Man or Star Wars Legos - or other games on
the X-box (a gift from everyone out there when he was first diagnosed).
I can't tell you how many hours Greg and Ryan and Chris played Pac Man.
He was at an age that the controls were a little complicated but he liked
to have it on. I thought I'd be a mom who discouraged video games. I realized
he enjoyed them and he forgot about the cancer world with them on. I made
peace with game systems.
little personality mirrored a few of my more neurotic qualities. He had
to have socks with stickee stuff on the bottom - thank goodness for Old
Navy - and they had to be put on so the letters lined up perfectly on
the bottom of this foot - and that he strongly preferred the light blue
or red socks. He loved, loved, loved white cloth diapers which he held
on to when he slept. But not just any cloth diaper. It had to be the kind
with the extra padding in the middle. And it had to have a tight weave.
It was pretty hairy for a while when I couldn't tell the difference and
he would say, "not my favorite" over and over until I got it
right. He would clutch them in his hands unless they were already occupied
with a mini light saber or Pokemon, Digimon or Yu Gi Oh figures.
we had a computer in Ryan's room. Directly next to it was a Pokemon poster
with a picture of each Pokemon. Ryan circled all the guys he didn't have.
On many days and nights he would surf e-bay looking for some of the ones
he didn't have. If he found it, we would print a picture out and he would
sleep with that picture for days. If he won the bid on a Pokemon he didn't
have, we'd have it for "power" and he would do those laps for
it. Then he would sleep with that Pokemon for days. And the picture on
the poster was highlighted to represent that he now has that Pokemon in
arrive at Ry's room on 5200 to find Greg sitting on a folding chair with
Ry on his lap in front of the computer. Besides surfing for Pokemon, they
were regularly listening to music. Sometimes popular hip hop but even
more often fun kids tunes like from the BackYardigans. He loved the Secret
Agent Man song. He and Greg would sing it and chair dance. They were sometimes
in sync like they were one person.
In recent months, Ry would sit on Greg's lap on a comfy recliner at the
clinic for hours while Greg played X-box. I remember sometimes when Ry
would fall asleep on Greg and Greg would ignore the fact that he needed
to get up because his legs were falling asleep or he had to go to the
bathroom. Their favorite X-box gave of late was Halo. Ryan would often
pick up the second controller and wander the galaxy looking for aliens
to destroy. I think he had a parallel with the game with the bad guys
in him. And he fought them with a vengeance.
He was never
violent at home - he never hit or did anything that would hurt anyone.
He was gentle and loving. If he heard a young child crying at the clinic,
he would say, "Ohh, poor baby - he's getting a pokie." He played
with his light sabers responsibly - he only hit "stick to stick."
much more. He loved play doh. He loved Power Ranger and Star Wars legos.
He enjoyed squishy animals like snakes and frogs. The zoo was an all time
favorite place to go and he went in recent months with his brother. I
could go on and on.
At the celebration, there were other superheros in attendance. They are
cancer patients and cancer survivors. They include current cancer patients
from Ryan's clinic: Chassity (16, currently battling neuroblastoma), James
(16 or 17, currently in treatment for a type of cancer), Michael Bean
(about 14, just finished treatment for rhabdomyosarcoma). They also include
cancer survivors: Tim Quick, Wendy Sall, Mike Gallagher, Amy (DiGiosia)
Speed, Lisa (DiGiosia) Speed, and surely many others.
so many friends and supporters who came to share in the celebration with
our family, including quite a few nurses and staff from the clinic, Dr.
Horn, nurses from the hospital and child life staff from the hospital.
Tori, Ryan's best buddy from the Duke bone marrow program, traveled from
Durham. We had friends fly in from Texas, California, Utah, Kansas, Chicago,
Virginia Beach, North Carolina, Georgia, Pennsylvania and other parts
around the country. Our dear friends the Fontanillas and Gumabays drove
home for the day with all of their children from vacation. Ryan's (and
now Evan's) day care provider, Jackie, flew in from Florida during the
middle of her vacation. Oma's (Greg's mom) boss flew in from parts unknown.
My longest and dear friend Amy came along with her parents.
Countless high school friends came - some of whom I have kept in touch
with and many whom I have not had much direct communication with during
the last 20 years. There were college friends, law school friends, parents
of children in treatment, neighbors, friends of my and Greg's family -
all at the celebration. My boss closed the office down and everyone attended
from beginning to end. There was a large contingent of Stafford Sheriff's
Office members and Fairfax County police department. Greg's bosses and
colleagues attended the celebration along with several judges. And there
were internet supporters who came as well.
red - a red tie, a red shirt, a red suit, a red scarf. Red was Ry's favorite
color. The bicyclist clubs around the country that were involved in the
fundraisers for Ry wore red in all parts of the country to honor Ryan.
Judge Bass, a Stafford County judge, donned his red tie.
All of this
love and support for my Ryan. All for a 5 year old boy. All to honor his
short but distinguished life.
I never told you how or why he died. It's not definitive yet, but we do
know some things. The cause of death listed on his Death Certificate is
Congestive Heart Failure with Sepsis secondary to lung problems secondary
As you know,
he was admitted to PICU because there was a large amount of fluid around
his heart. His heart functioning was diminished but not entirely bad.
It was functioning at around 45% when 50% and up are normal. He had echos
and EKGs each day he was in PICU. They were all looking good. There was
a tube coming out of his body from the area between the sack around the
heart and his heart. There was no additional fluid build up around his
a severe illness caused by overwhelming infection of the bloodstream by
toxin-producing bacteria. He had two very serious infections diagnosed
about a week before his death. He was on serious antibiotics for these
and was asymptomatic other than the night we arrived at Duke when he had
a 102 + temperature for several hours. He didn't have any symptoms all
the next day prior to getting any antibiotic treatment for them and remained
asymptomatic as far as fevers or other typical signs of infection until
death. One of the docs told me that Sepsis can occur at any point and
once it's on that track sometimes it can't be stopped. The goal in the
PICU was to weather the sepsis and support the organs. Because he already
has many health issues with cancer and its treatment, he is a very vulnerable
patient. It's not as if he was a healthy boy and got sepsis - even then
it is a condition that is treated in the ICU and has a high death rate.
Ryan's little body was at a huge disadvantage. But no one expected him
to die. He had been dealt so many challenges and he always came out on
He had a
bad fluid retention problem that nagged me for many days. He was having
intake but not much output. I wanted attention to it. It was my primary
focus from the time we entered into PICU. It was the topic I raised repeatedly
with the doctors during that first 24 to 48 hours when I had a bad experience
with the staff. By the way, it turns out that there are a ton of excellent
professionals and kind, caring people in the PICU. It was an atypical
day on the unit with several emergencies and an atypical experience from
all accounts. Ryan was treated well and was well cared for during the
rest of our short stay.
I told you
Lisa Barnett and I were with him late the night before he passed away
- each massaging parts of his body. Then he "slept." It wasn't
very restful. He was sitting up and his breathing was labored. I slept
for maybe an hour and then I got up with a bad feeling. I checked his
vital signs and felt him. His limbs were very cold. I sat on his bed while
he slept and rubbed his limbs - hoping to make them warm. He was still
having no output despite having been given a good deal of fluids and several
doses of 2 drugs to get the fluids out (Albumin to pull fluids into the
cells and diuretics to make his body pee it out). And the bag was empty.
This concerned me greatly. I had the night ICU doctor woken up - Dr. Fetterman
- and he cheerfully attended to Ryan. He was aggressive and concerned
yet calm. Ryan's blood pressure got lower and lower and his oxygen levels
dipped despite being given oxygen support with air in his nose.
a point where Dr. Fetterman said the only safe thing to do was to intubate
him. This would mean a machine would do the breathing for him. A position
I did not want to be in but knew that it was a life saving measure. It
was about 6 a.m. Dr. Perdahl had been called when this was going on to
alert her. She arrived at the hospital - even though she was not scheduled
to be in the hospital that day. I went to the parents lounge on the Hem/Onc
floor to wait for the procedure to be done. It was not too many minutes
into it that Dr. Perdahl came in and told me she needed to update me.
She said as soon as they intubated him, his heart rate fell. She said
it was serious. She said I needed to call Greg.
I stayed strong. Ryan's heart rate slowed to nearly 0 or stopped about
4 different times. Each time they used life saving methods to try to revive
him - CPR and compressions on his chest were able to bring his heart rate
back up until it was "stable". At one point he was "stable"
for about 45 minutes - and a few minutes before the 45 minute mark Dr.
Fetterman said often if they can make it to an hour you've reached the
safety zone. He didn't make it to the hour mark and they continued to
do life saving measures. The room was full of nurses and doctors and staff.
Another echo was done of his heart. The cardiologist was paged and when
he got there he examined the picture. He now saw some sort of mass on
one of the chambers of the heart. It had not been there the day before.
It was most likely a clot or perhaps an infection. It seems like a clot
is more likely since he was on heavy antibiotics for the infections that
they had discovered more than a week prior. Once his heart rate fell after
that one long 45 minute period, it never seemed to recover. Each time
they stopped chest compressions, his heart rate dropped.
it was 3 hours of hard labor trying to get his heart to work on its own.
Dr. Perdahl did what I asked her to do - she let us know when it was not
productive to keep up the procedures. She came to us and told us that
now it was more for us then for him. We asked them not to do the compressions
and other life saving measures next time his heart rate dropped. They
honored our request.
I made our way to the head of the bed and talked gently and sweetly to
our beautiful son. Throughout the procedures Ryan made not one sign that
he felt any pain. He did not moan or make any kind of movement that indicated
he was scared or uncomfortable or in pain. The nurses told us that he
could hear. We talked and talked. We told him that he had beaten the bad
guys. We told him now he should take a nap - a 1 minute nap - the words
we used to tell him to take a nap when he didn't feel like it. He should
rest - to think about how good it felt to relax and let go. We told him
he would be playing with my mom and dad - if he wasn't already. We told
him he'd see Onyx and Frannie. I told him I was the luckiest mommy who
ever lived. Greg talked about all his favorite things. We told him we
loved him so much. We thanked him for letting us take care of him and
for bringing us so much happiness. Greg was nose to nose with him one
was buried with many treasures and comfort items. He had his favorite
Yu Gi Oh guys in his hand - Skull Dice and Graceful Dice; there was a
Pokeball filled with Pokemon; he had glow sticks and marbles; the necklace
he got from Adrianna before transplant was around his neck; a Livestrong
bracelet on one arm and a Power Ranger morpher on the other; Yoda's lightsaber
was in the grasp of the other hand. We always surrounded him in life with
the comforts of things that made him happy - and it was no different in
was gorgeous. At the start of the motorcade to the burial site, the clouds
darkened and it began to lightly rain - as we got closer to the Memorial
Park, the clouds parted and beautiful sun rays shined down upon us. The
wind kicked up as a Fairfax County police officer sang Wind Beneath My
Wings. Ry was laid to rest on top of my mom - sweet, loving, kind Bonnie.
We were all comforted at the thought of her holding him in her arms.
was a continuation of a beautiful celebration. The room was decorated
with bright colorful balloons with glow sticks attached to the end. There
was one balloon for each week of Ryan's life. We had display tables with
memorabilia and pictures. A slide show was shown to some of Ryan's favorite
tunes: Soak up the Sun, Baby Boy, A Few of My Favorite Things. . .
celebration for a brave and valiant warrior.
have been generous donations for Growing Hope, the foundation that supports
the families and kids at the clinic here in Fairfax. The donations have
been going to the leader of our support team and I am forwarding them
to the clinic. I am really hoping some of you make this your cause and
continue to send contributions - maybe yearly or however would best suit
you. In the event you take me up on that, I want to list the address for
Growing Hope directly. Please put Ryan Holt in the memo of your check.
We will be happy to continue to forward the money to the foundation or
you can send it to them:
PO Box 151
Fairfax Station, VA 22039
want to make sure those of you who donated money for Greg and I to help
with our expenses and costs know how much we truly appreciate it - it
is beyond kind and I have no appropriate words to thank you.
people tell me that they are struck by the way I stay strong and many
of them wonder if it is the same behind closed doors. I am actually very
lucky to have some coping mechanisms that I can only assume I was given
at birth. That is not to say I don't ever cry or get very sad. Somehow
my body compartmentalizes my emotions. I don't force it to or will it
- it just happens. I put all the things that are painful in a box and
set it aside. All the things that make me happy and comfort me are then
left to fill me up. I also keep focused on tasks at hand. Prior to the
memorial service it was all the arrangements that kept me busy. Now I
am concentrating on doing some home projects and soaking up Evan.
If you were
to see into the lock box, you'd see the pain that rips through a parent
who loses a child. There's a lot of unfinished business thoughts - loose
ends that will never be tied - like seeing kids go off to their first
day of school yet knowing your son will never have that chance. It crops
up at times like when you pass the movie theatre under construction and
remember the conversation with Ry about going there when it opened - but
know that's not going to come to pass. It's thinking about girlfriends
and college and sports - that won't be experienced by your sweet child.
paralyzing moments when you least expect them that you couldn't have put
in the lock box because you hadn't anticipated them. It seems that it
is easier to cope when you brace yourself but there are times you are
blind sided by the emotions. It's like when I cleaned out the van and
saw Ryan's beloved Pokemon book that listed all the stats of each Pokemon
- just like a book filled with baseball cards. He knew all of them. The
pages were worn. There are stickees on certain pages that he had marked.
It's holding the book that he held so many times on his lap and in his
hands. It happened when I found the frisbee we got as a free gift at a
restaurant we went to in Virginia Beach - remembering only 3 weeks before
he was walking on the sand and sitting on the hotel balcony - all things
that will only live on in memories. The knot builds in your throat and
then you swallow - knowing you must and will carry on - if for no other
reason than for the very son you mourn.
We will survive - as a family and as individuals. There will be pain but
we have a lot to live for. We have our work cut out for us if we are to
truly honor Ryan's life in our daily living.
We have decided
to go to the beach for a few days with Evan before heading back to work.
We are anxious to give him some special time and get some of that unconditional
love from him.
I plan to
occasionally update - mostly because I'm not ready to give it up - and
I'm not ready to lose all the emotional support out there. Thank you for
walking our journey - I'm only sorry it was too short.
August 24, 2005
DiGiosia Holt passed away today. He fought harder than
any little five year old should have to. We ache deeply but have not
one regret. The joy he brought us is immeasurable.
and I have felt a measure of relief for Ryan today. We believe
my parents came down and showed him the way to heaven.
Lori and Greg
is currently in the PICU - the Pediatric Intensive Care Unit.
It's a whole new world to us - one we hoped never to know.
week has been grueling to say the least. On Monday the 15th
of August Ryan had transfusions of platelets and his chemo of
Gemcitibine and Veneralabine at the clinic and then it was off to
Duke. We arrived at 1:00 in the morning on the 16th. Once I got Ry's
IV medicines together I went to hook him up - only to discover a
temperature of 102.2. His breathing was also labored. Tylenol did
not relieve the fever as quickly as usual which meant a sleepless
night of taking vitals every 15 minutes and rotating wet clothes
across his hot little body. It was 5 am when the temperature finally
day at Duke turned out to be much more than we bargained
for. Ryan was cultured due to the fever. He was only supposed to
have a Pulmonary Function Test and physical. In addition, he needed a
chest x-ray, platelets and a potassium infusion - I think that's it.
The platelets were the things that really threw me off because after
he got platelets on Monday he was in the 130s and on Tuesday at Duke
he had only 13. It was dinner time when we left there. Exhausted
from the last 2 days, I got in bed at 10:30 only to be awakened at
midnight by Greg telling me that the doctor on the floor of the Bone
Marrow unit at the hospital called and told us to immediately come in
for antibiotics because bacterial infections had grown from the
Ryan and left for a 4 hour adventure to the "BOP" room on
5200 for Rocephin and Vancomycin - some big antibiotic guns. His
cultures grew Staph Epi and a Strep. Greg was having flashbacks of
life on the floor which was nearly his undoing. Ryan was an absolute
trooper. He had not had a good night's sleep for a while due to
congestion and breathing issues over the few days prior to our trip
and had finally settled in that night until we had to get him up.
Once there, he sat up and told me he was hungry and interested in
watching a movie. Next thing you know Ryan is watching Scooby and
eating mashed potatoes, lima beans and pineapple slices. When we were
leaving the floor, Ryan told me that Frannie was still here - we had
talked about her often since the transplant and that she was still
there - but I had not told him of her death. I felt a big lump in my
We made our
way back to the hotel to catch a couple hours of sleep.
The next morning was the scheduled big event - the reason we went
there. He was set up to get the boost - which is the infusion of the
left over stem cells from the cord blood he got in the transplant. It
turned out to be a blip on the screen for the day - but none the less
dramatic to me. Brooke - our good friend and nurse to Ryan - took
care of Ryan. When the tiny bag of stem cells arrived I stared into
the bag - willing it to have the powerful T-cells that we needed.
Brooke and I literally squeezed all parts of the bag and tubing to get
each and every drop into Ry. The stem cells were already diluted in
some medium when they arrived at the day hospital but I'm told the
amount was roughly 3 cc's of actual cells. The hope is that some
powerful (unsuppressed) T-cells go in and find lymphoma and kill it.
T-cells multiply much faster than lymphoma - and although I don't know
the mechanics - I know it kills cancer cells. In addition to the
boost, Ry got more platelets, another potassium infusion, Rocephin and
Vancomycin - I think that's it.
- although we left the clinic at about 7 pm and Ry was
exhausted - I felt a great need to celebrate. Brooke and Tori (Ryan's
"best buddy") joined us at a Japanese steak restaurant and we
that - celebrated. Although Ryan wasn't feeling too hot, I think he
enjoyed his first experience with watching a chef chop, toss, cook and
Thursday to head to the clinic for the first dose of
antibiotics so he got the dose before we headed home. We finally got
back home in the late afternoon. The antibiotics were delivered for
us to start the evening dose. They made each of the antibiotics split
doses so that half would go in one lumen and half in the other. That
meant that both of his lines were tied up with antibiotics and I
couldn't do the other 2 home IV meds - GCSF and V-Fend until those
were done. At 1:00 am I hooked up the last medicine and drifted off
to sleep on the couch next to Ry's bed. My intention was to be there
when it finished at 3:00 am so I could unhook him and flush him. I
don't think I quite made it - Greg ended up waking to the pump alarm
and completed the process.
got up as early as our weary bodies would allow. In my mind
I knew I was wiped but that I could finally get a good night's sleep
that evening - or so I thought.
continued to be labored and his swelling was getting
worse. At this point, he seemed to be carrying around a decent amount
of fluids in his face, his legs - and now his torso. He needed IVIGG,
platelets and blood. For various reasons we determined that time
would run out before we could do all of them so the IVIGG was put on
the back burner. First up: platelet transfusion. During the
platelets transfusion, Ry's saturation dipped down to a point that Dr.
Weil sent us to the hospital. The saturation level is the amount of
oxygen he is getting into his lungs and correlates directly to his
ability to breath. We left his bag of red blood cells at the clinic
and made our way to the hospital.
rates were great when we got there but I wasn't all
together displeased to be there because of the increased swelling and
fluid retention - mostly in his abdomen.
x-ray was done and the result was the same as the last 2
over the last couple weeks. Wet lungs. No pneumonia. No obvious
sign of infection or lymphoma. He still needed his red blood cells -
and it took the hospital a ridiculous 5 hours to get the blood to the
floor. The transfusion ended at 1:00 am and Ry's saturations stayed
fairly stable and good. We slept a little and then left in the
morning. The fluid issue was never directly addressed but since his
vitals looked good we marched along as in the previous cycle where his
body took care of the fluids over the course of the cycle as he
time his body just couldn't handle the fluid overload. On
Saturday we noticed continued hard and heavy breathing. It was like
he couldn't catch his breath. He desperately wanted to play with
other children and asked me to call some of his friends. Luckily our
neighbors were home and invited us to visit. Ry enjoyed hanging out
with Joseph and Amy despite his inability to get around well. He
talked about all his favorites things with them - Pokemon, Digimon,
and the like. When we returned home I noticed the whites of his eyes
looked yellow. The fluid issue continued to get worse and his belly
was getting round and very distended. His breathing was difficult and
we just didn't like the whole picture. After speaking to Dr. Perdahl,
we headed back to the hospital and checked in that evening.
not doing too hot at the hospital. His saturation rate was
not nearly as good as the prior evening. His breathing was at a
worrisome point. Ryan's liver was enlarged and he was jaundiced. His
gall bladder was large indicating poor nutrition status. Greg and I
both stayed over night in the hospital room - with great concern. On
Saturday morning Ryan had a CT scan. The heart was surrounded by a
great deal of fluid. It needed to come off asap. There was also a
good deal of fluid in the lungs but not the primary issue. The heart
was being compromised to a degree that it could collapse upon itself
with more pressure from the fluids. It did not appear that he had
Venal Occlusive Disease of the liver or that his lymphoma had grown
back in the liver which were the 2 most likely culprits prior to the
Off we went
to the PICU for a procedure called a tap to puncture the
area between the sack around the heart and the heart - the location of
all the fluid. There would be a catheter left in dwelling and coming
out of his chest to drain fluid which might accumulate after the
procedure. It was a sobering serious situation. The risks were great
with a child in Ryan's condition. He had never gone under anesthesia
under such poor breathing conditions. His platelets are continuously
low making him a very big risk for uncontrolled bleeding. He was also
neutropenic which means he is in the highest risk category for
It was the
longest hour and a half of my life - especially because
they estimated ½ hour total.
400 cc's of fluid off around the heart during the procedure.
An additional 600 to 700 came off over the next 12 to 18 hours -
mostly during the first couple hours post surgery. An incidental
procedure was done to the lung on the side of the heart. In the first
pass to the heart, the cardiologist entered the area where fluid was
dwelling around the lung and drew out about 45 cc's of fluid. Not a
bad thing to get it off even if unintended. It explained the delay in
the procedure. The fluid coming from the area around the heart was
bloody. There may have been some blood there before the procedure but
some has been attributed directly to the procedure itself. It was
explained to us before hand that there is a good chance that a vessel
or the heart may get nicked in the procedure given the location of the
fluid and what surrounds that area. It seems that risk was realized.
There is a real concern about the loss of blood because of his fragile
anemic state as well for bleeding due to his platelet deficiency. He
has been monitored for these issues and transfusions have been
essentially around the clock.
x-ray done in the room immediately after the procedure showed
a better picture of the other lung on the right side. There was a
good deal of fluid in that lung. We agreed that while Ryan was still
under anesthesia that they should do a tap of that lung as well and
remove the fluid. About 300 cc's was removed from that lung. All
total it was determined that there was nearly a liter of fluid removed
from his little body. The best news was that he tolerated the
procedures well - I couldn't ask for more. That horrible fear that
you have said goodbye to your child disappeared - at least for the
I know he's
sick - we all know he's sick - but it really hits home
when the PICU nurse talked about what a sick boy he is - think about
her perspective. He was (and is) stable in the PICU. He is not
currently one of their sicker kids - the nurse was just referring to
his whole health status.
of the fluid overload and retention is unknown. That is
being studied from every angle with many different tests being run on
the fluids. The options are too varied and many to list here but
include the obvious viral, fungal and bacterial infections. One other
likely explanation is the toxicity of the drugs especially in
conjunction with the treatment for transplant.
Many of the
tests take several days to get results. Depending on
whether there will be a definitive diagnosis, the treatment may
For now we
are desperately trying to get the fluid off and out of his
major organs and to drain the fluid from all the other spots in his
body. A minimal amount of fluid continues to drain from the catheter
coming from the space around the heart. I'm really bummed that the
right lung seems to have filled up to the same extent it had been
yesterday. After the procedure yesterday there was really no
intervention to remove the fluid from his lungs or other parts of his
body until late afternoon - outside of the catheter from the heart. I
watched his face, feet, belly, penis and hands fill up with fluid - I
could see it growing before my very eyes. And I knew from the morning
scan that his lung had filled up again over night.
is sitting outside the cells. He will be getting diuretics
to help his body to urinate the fluids out - the only problem is that
diuretics can only get the fluid in the cells. In order to pull the
fluids into the cells his body needs protein which sucks it back in
and retains the fluid in the cells. Ryan is severely malnourished so
they are trying to get the protein by way of blood products and
albumin infusions. We can only hope and pray that he will not need
any other invasive procedures and that this attempt will eliminate the
fluids from his body - especially the lung.
So on top
of all of this he had his first reaction to red blood cells.
He has gotten countless units of red blood cells over the course of
treatment. Today his body reacted to a unit. Luckily Dr. Perdahl
rushed over to the PICU and handled the situation before it got out of
control. The PICU docs were unavailable.
I had a rough
day in the PICU because I did not feel like our concerns
were addressed timely and appropriately. There was very poor
communication from the doctors and staff to us. Their attitude was
discourteous and unresponsive. No doubt they had many issues going on
with other children but I was very frustrated at the lack of
communication or concern for my feelings. I was approached from a
very defensive and guarded position by virtually the entire team. I'm
not used to that at all and hope for a better day tomorrow.
been fairly traumatized by this whole experience. The actual
punctures are painful. He also awoke with a G-tube coming out of his
nose. It was recommended during the course of the procedures so it
was not something I had prepared him for. I knew he would be angry
about it and I was right. The G-tube is a direct line to the stomach
and small intestine. When things are put in the tube, it is as if you
ate them without the benefit (or displeasure) of taste. He can get
all of his oral medicines through the tube. If I could get Ryan to
really appreciate this maybe he wouldn't be quite as angry. He can
also get Pediasure which is packed with all the nutrients he needs.
It was important to have in order to get him back on the right track
for nutrition. He is not eating and he desperately needs better
nutrition. TPN is a poor choice right now due to his liver issues.
Also, his gall bladder is enlarged due to his poor nutrition. If he
uses his gut - as the G-tube will then his gall bladder will constrict
and help remove the bilirubin in his liver. All very good things.
But the poor sweet guy wants to leave the room desperately. He
obsesses over how long we might be there and what it will take to get
us out of there. I have no good answers. He's sick of hearing me say
that we are working hard on that and that we are going to make him
better and then he can leave.
I leave you
with these good thoughts: Ryan is currently stable. He
sits in the bed clutching his Yoda light saber - ready to use it on
anyone brave enough to try to wrench it from his hands. He's witty
and spunky. Fortitudine Vincimus - By Endurance, We Conquer.
SUPPORT TEAM UPDATE to the above information...
Tuesday Aug.23...11:45 am
Ryan's condition has worsened since last night's update. His oxygen saturation
have gone down considerably (curently at 91% - a LOW number) despite a
feed of oxygen. He continues to retain water despite the catheter draining
his heart and lung area. His body has become severely bloated due to the
back up of fluids
and he is having trouble even opening his eyes because it is so swolen
The hope is that they won't have to incubate him (breathing tube and machine
as it is typically not an easy procedure to recover from given his frail
The doctors are trying to determine exactly what is causing him to retain
fluid and have
considered diagnosis such as Veno-occlusive Disease, a serious disease
that blocks the small
veins in the liver.
Keep Ryan and family in your prayers. We will update as often as possible.
is stable now. He is currently on a breathing machine (not incubated)
Bipap machine which forces oxygen down his airway. His oxygen saturation
level has risen to almost
100% (a great improvement). They are also giving him a miriad of drugs
to draw the fluids out from
his system, maintain nourishment, and treat the many symptoms he is experiencing.
are being performed now to determine the cause of these issues. We will
update as often as possible.
July 15, 2005 to Tuesday July 26, 2005
this journal entry to Frannie. Francesca King. Frannie
passed away on Sunday the 24th of July at Duke University Hospital.
She was four. I remember the first time I met Frannie. She had a
quiet loving spirit. She was soft and sweet and friendly. It was in
the lobby of the out-patient clinic at Duke. It was one of the first
days we were there. As is typical, Ryan had a few action figures he
was playing with on the floor. It was a Teen Titan battle. Frannie -
with her big chestnut eyes - marched up to Ryan and gave him her
heartbreaking smile. She had her hair braided in pig tails and on
that day Ryan gave her a nickname that only he referred to her as - he
called her Piggy Tails. She picked up one of Ryan's guys and the two
played happily until one was called in to the clinic. Thereafter they
made eyes at each other and played together - it was Ryan's first
friend at Duke.
I also remember
Viesta - Frannie's mom. I saw her across the lobby
with worried eyes. I knew that look. As is turns out, Frannie didn't
have cancer. She had never had chemo. She had some unnamed
non-specific auto-immune disease for which the medical community
believed transplant was her best hope at a normal long life. The look
in Viesta's eyes made even more sense - she had the fear of not
knowing what was going to happen to her child when she was given the
toxic chemotherapy drugs. And added to that fear, she had the fear
that all the transplant parents shared - we were signing our kids up
for a life threatening procedure. But we all did it for a good
reason. We did it to save our child's life. We knew the risk but the
alternative was not acceptable - giving up was not an option. She was
a completely dedicated mom. She loved Frannie and all her children
into the hospital around the end of January. Ryan
asked about Piggy Tails. And while he was getting radiation and chemo
out-patient to prepare him for transplant, we would tell him that he
would get to be Piggy Tail's roommate at the hospital soon. It was
one of the reasons he looked forward to staying on the floor of 5200.
Frannie never left Duke - until she became an angel. She fought as
hard as any child could. She was a true warrior. She went out on one
pass while she lived at Duke - and that was to celebrate her fourth
birthday. It was in the beginning of February - prior to transplant.
Ryan went to her birthday party. She had a lot of fun that day -
celebrating her birthday alongside her twin sister Jessie. Ryan gave
Frannie a Teen Titan figure as a symbol of their friendship that
started outside the clinic. Frannie and her sister were showered with
love and gifts. It was obvious that this was a family that cared
deeply about each other.
I can only
hope and pray that the love that they have for each other
will comfort them during these days of mourning. Frannie doesn't feel
pain anymore - and for that I am sure they are grateful. Her spirit
will live on in those that had the privilege of knowing her. I
consider us lucky to be among that group. And now Frannie is an angel
- looking over the other children and her friend Ryan. We love you,
week in review.
pales in comparison to the loss of Frannie. When I think
about Frannie's struggles, I am that much more grateful for Ryan's
accomplishments. There are times in every day that Ryan has pains or
issues related to transplant and cancer - But there are always lots
of moments of joy. Each day. He is here with us - at home. He talks
to us. He can usually get around on his own. His major organs are
functioning on their own. He laughs and he tells stories and he plays
with his silly action figures and he dotes on his little brother and
he kisses me and hugs me and pats me on the back. What more can I ask
I can barely
remember all the things he has done this week - and
that's a good thing because it means he is active and playing. I can
remember play dates with Lou, Diego and brother Tony, Uncle Chris and
Aunt Angie. I was with him when we saw Willy Wonka in a drive-in
movie theater with his beloved Chris and Angie. And I can still hear
his giggles during the parts when Augustos was sucked into the
chocolate river and Veruca met her appropriate fate when she was
shoved down the trash chute. I have a specific memory of a funny
conversation last week when I "triple dog dared" him to do something
like take his medicine - and he responded by imitating the infamous
dare scene in A Christmas Story by picking up a spring roll and
sticking his tongue to it and muttering some incomprehensible excuse
why he was not able to do what I asked him to do. I recall sitting at
the play table with him in the doctor's office and making sand art. I
remember his relief when I rubbed his arms and legs when they ached.
And I feel joy when I see his little face losing the puffiness and his
hair coming in. The hair thing is a little deceitful because it leads
you to believe he is no longer sick and yet there is still a fierce
battle going on. There are too many potential pitfalls to count - or
to constantly worry about lest I find myself consumed in fear. I felt
pain in my heart when he screamed about his achy legs and told Greg
that he wants the bad guys out of him - that mom told him that he
feels this way when the good guys in the medicine go to find the bad
guys in his body - and he wants the good guys to get rid of all the
bad guys. He just wants the pain to stop. But when I put my head on
the pillow at night - I know we won the battle for the day - and
again, What more can I ask for?
We have been
watching his blood pressure go up on a daily basis which
is likely related to some sort of kidney problem. It is not
considered too serious at this point. For now it just means one more
medicine to add to his daily intake. Ryan got platelets Monday,
Wednesday, Friday and Monday. We expect him to get them again
tomorrow (Wednesday). He is also needing blood transfusions about
once a week. The need for constant transfusions raised a concern by
some of the docs up here that the graft is in danger but Dr. Martin is
not overly alarmed at this point.
Ryan is right
in the middle of Cycle #2 of Gemcitibine / Venerolbine -
a four week cycle. His body handled week #2 fairly well and thus far
week #3 is even better. Thankfully we have not seen the Polyoma virus
- the one that causes him to have painful frequent urination.
Hopefully our changes with adding Prilosec and upping his parameters
for platelets have done the trick and we can repeat this for any
future cycle. He is also eating slightly better. He is still a mere
15 killograms (that's 33 pounds) but at least he is holding steady.
We are still
kind of wandering down a path without much direction.
For now, the doctors think these chemos are the way to go. It looks
more and more like we may postpone our trip to Duke - although I think
Dr. Martin is ready, willing and able to give the boost at anytime
with the only criteria being "microscopic" disease. Sometimes
seems to be a lofty goal. But whenever the time comes, I know that he
will be ready to go into action on a moment's notice.
outward signs of cancer - sigh of relief. Although we can
never be sure of what's going on in the inside. No one is overly
confident with his cancer. It's a day by day thing.
a CT scan of his neck, chest, abdomen and pelvis yesterday
the 25th and a PET scan today the 26th. This will allow us to take a
look at the inside. We will learn about the results on Thursday. We
have a meeting scheduled with Dr. Horn to discuss the results and the
game plan for treatment. If this regimen is working then we will
probably keep doing it. The issue about when to get the boost of the
left over stem cells at Duke is really up in the air.
birthday is this weekend. We already had one celebration
with our dear friends the Sochas. The next celebration will be our
small party on Saturday. And then a really big event - we are
planning to take Ryan to meet Destiny's Child - yes, that means
Beyonce - on Sunday - on his actual 5th birthday! It's all thanks to
Chassity who insisted that they let Ryan go even though he was not a
teenager. It's pretty cool - Destiny's Child set up this get together
to meet kids who have diseases and other serious medical issues.
Beyonce doesn't know it yet, but she is Ryan's girlfriend. I hope to
capture a picture of her giving Ryan a big kiss for his birthday. And
she will probably never get the chance to understand how truly lucky
she is to have met him - how precarious his condition is and that
there was never any guarantee that he have a fifth birthday. And she
will get to celebrate this milestone with him. I remember the sheer
terror that would settle upon me when I thought about how many kids
don't make it through transplant. And of course Frannie comes to mind
again - and I so wish she was here to celebrate with Ry. I don't know
that I will ever make sense of it all. But I know one thing for
certain - the loss of Frannie only emphasizes how precious life is.
Each birthday is a gift. It goes without saying that we are overjoyed
to be celebrating the Ry-guy's fifth birthday.
July 14, 2005
covering July 6, 2005 to July 14, 2005
July 6, 2005
The day started
off rough - it was a no eating / no drinking day. Ry
was scheduled for surgery at 12:15 to have his tubie with the single
lumen removed. We made a short stop into the clinic first to make
sure his platelets were high enough for surgery. By 10:00 am, Ryan
was holding a pudding snack in one hand and a rice krispy treat in the
other. He was dying to eat and drink. He wanted them so desperately
that he got them and held them in his hands. It was so sad.
We made it
to the hospital by 11:00 am - the appointed arrival time.
Ry was called back by noon and was holding up with pretty good
spirits. He knew the end was near. Or so it should have been. By
2:00 pm, I was angry. We lost our surgery time because the surgeon
was running late. I knew his surgery would be very quick so I could
not understand for the life of me why he couldn't get squeezed in when
she arrived at 12:30. I reached the end of my fuse around 2:15 and
found a back room with the pre-op nurses and let them know how I felt.
It was unacceptable. They told me it would be at least another hour
before an operating room would be available. No. That's not okay. I
explained to them that he had not eaten or drank for 16 hours. I
explained to them that he is a chronic cancer patient who has enough
pain and suffering with cancer and the drugs but doesn't need to be
put through the unnecessary torture of waiting for a procedure that
requires him to refrain from eating or drinking. I let them know that
he is nutritionally unwell and that a day of starvation really takes
an additional toll on his body. And then I asked them who would like
to accompany me to the waiting room to explain to him that there was
no operating room.
It was then
- and only then - that a nurse called the main operating
room and found an available room there. It was still several minutes
before they could pull it all together with the anesthesiologist, the
nurse from that o.r. room and the surgeon. By the time he was under
anesthesia is was 3:00 pm. It's just not right.
very pleasant - and very hungry. The first thing he did -
according to the recovery nurse - was pull his shirt down to inspect
the area where the tubie had been and then gently touch the area that
had been covered by a bandage since January when he got this tubie.
We were called back about 4:00 pm but I found out from the nurse that
he was in the operating room for SEVEN MINUTES - yes, he waited all
that time for a 7 minute surgery!!!!! Barbaric.
the rest of the evening - eating and drinking at will -
albeit small amounts.
July 7, 2005
A day off
- ahhh. Greg took Ryan and his buddy Ben to see Shark Boy
and Lava Girl. Ry was tired but overall enjoyed the day.
In the evening
Ryan had an intense headache and then he threw up. To
explain the emotional side for Greg and I is nearly impossible but
these episodes test us to the limit. One of our biggest fears is a
relapse in the central nervous system. First and foremost, it is
excruciatingly painful. Second, it is in such a dangerous and fragile
area involving the brain. Last, it would be a devastating set-back
that he may not be able to overcome. I tried to keep my head together
and explain to myself all the other possible reasons for the headache
and vomiting. I thought of many. Greg was still focused on cancer in
the central nervous system - and who could blame him. It's a hard way
to live. We treaded lightly all night - fearing a repeat. Thankfully
it did not come.
July 8, 2005
a typical long day at the clinic, it was quite pleasant. Ry
felt pretty decent - and it's no coincidence that he is feeling well
as he nears the end of this cycle. He was transfused with platelets
and red blood cells and was given his weekly IVIGG. Like I said - a
shared our concerns about the central nervous system. Upon
questioning she did list several other reasons for the headaches -
including poor nutrition which was not helped by the day long
starvation on Wednesday and low hemoglobin. If his headaches
accompanied by vomiting continues, she will insist on a spinal tap.
She and Greg consider doing one for peace of mind even without
symptoms. Myself and - according to Dr. Horn - several of the other
doctors think his disease changes from day to day so one clean spinal
pleasant and upbeat despite the hours. It makes sense
actually - if his body is stronger and he's not feeling horribly, then
he finds a way to make the most of his environment.
We were yet
again the recipients of an incredible act The Lansbury
family has a son named Ben in treatment for leukemia. They see us
every time they come to the clinic - because of course we are always
there. Kecia, Ben's mom, brought us lunch on Friday. It's just so
amazing to me that people reach into their inner strength and focus on
others when in fact they face challenging issues each and every day as
well. They have also invited us to dinner on Sunday.
We got home
at 6:30 pm in time to play with Evan. His latest party
trick is to dive with his arms straight out and land flat on his belly
- then he rolls over 2 times until he's kicking his feet in the air
like a turtle on its back.
No vomiting. A good day.
July 9, 2005
The day started
off great. The Kelly Peterson clan came over for a
picnic. Ryan, Riley and Caroline frolicked in and out of the house.
When Riley first arrived, he ran up to Ryan and gave him a bear hug -
nearly sending Ryan onto the ground. I loved his enthusiasm. Karen
and Jim screamed in fear. Ryan said, "It's okay - I have platelets."
And he's right.
was passing out the food for lunch, he explained to Riley why
Doritos were adult food and might make kids teeth fall out (or
something of the sort). That was working until Ryan explained that he
can have Doritos because they have phosphorous. Again, he was right.
potassium and phosphorous have been way out of wack
lately - the nutritional problems. We continue to identify new ways
besides yucky tasting supplements to get these things in his body.
Did you know that dark soda has phosphorous? And Doritos has 20% of
the daily recommended allowance.
a little clingy towards the end of the visit with Caroline
and Riley. I was trying to catch up with my friend Karen but Ry isn't
used to sharing me. We will have our work cut out for us when this is
all over - but I will do it cheerfully to be in that position.
and no vomiting. Another good day.
July 10, 2005
one bandage change!!!! It takes us several hours to get
through the double bandage change. It still took a while but much
less traumatic having to do only one. Oh the day when we have none.
For whatever reason Ryan really hates changing them. Some kids do it
without too much fuss. It seems like Ryan is more sensitive to the
tape - I know at Duke the other parents would think we were torturing
him during the dressing change. He was considered a pretty happy go
lucky kid in transplant because he was generally feeling pretty good
and was pretty happy. But when it came to dressing change day, the
screams reverberated down the halls of 5200. Hooray for one bandage
We had a
fabulous day. The last day before Cycle 2 starts.
dressing change, we went to Daniel's baseball game. I had
wanted to go to one all season but his counts were too unstable.
Since he was without chemo for nearly 3 weeks and his white count had
been really good for about a week, we ventured out to Daniel's last
game of the season. It was for sure the highlight of the summer thus
saw his cousins Brady and Alexis. Brady gave Ryan a big
hug and Alex gave us her usual bouncy big smile. As soon as we got
there, Ryan spontaneously and silently lifted his shirt to show his
aunts, uncles and cousins where the old tubie used to be. Everyone
admired his chest and told him how they were so proud of him. Ryan
followed Brady and Uncle Kenny nearly everywhere and they were happy
to have him tag along. Ryan had never been to a game before. He
watched intently as Daniel fielded the ball. And he watched proudly
as Daniel hit a two out RBI double in the last inning. We had planned
to stay one inning.
One of my
favorite parts of the event was when Amy yelled to Daniel
(her son) when he was up in the last inning with two outs and they
were losing, "Have fun, Daniel." So precious. So mom.
After a short
rest at home, we made our way to the Lansburys. We all
had a blast. I can't remember feeling so carefree in a long time.
What I loved most is that it's clear when you go to their house that
their children come first. To me, their priorities are perfect.
headaches or vomiting. Central Nervous System involvement
doesn't come and go. If Thursday's episode was CNS involvement, it
would have continued over the weekend. Our deepest fears were
July 11, 2005
Day 1, Cycle
Gemcitibine and Venerolbine today. Just as soon as his
counts were excellent and he was feeling good, we do something to
knock them down. Well - if it means cancer free, it's worth it.
was pretty fun today. Ry needed no other transfusions or
other meds so the day was actually quite short in our book - in by
9:30 and out by 2:30. Our friend Yuri sat in the room with us most of
the day. She is on the list with the all-time greats like Chassity
and Michael Bean. Yuri has cancer. She is 18. She is so sweet and
positive - even when she feels bad. Today she had extremely painful
mouth sores but continued to smile and try to satisfy her belly
despite the pain in her mouth. While doing so, she showed Ryan the
depths of courage. He really likes her. When we're home, he recounts
things she told him - many things that he seemed to be paying no
attention at the time.
work - in the late afternoon - the body aches and low grade
fever began. This is the pattern we've come to learn from the last
cycle. The day he gets these chemos, he feels pretty rotten by late
afternoon. We were able to keep away nausea and vomiting by drugs -
us through the rest of the night. My poor sweet baby.
July 12, 2005
We were able
to avoid a clinic visit but Ryan still had a morning
appointment with Dr. Sarnes, the child psychiatrist. He feels fairly
comfortable with Dr. Sarnes - although still only an arms reach (or
less) from us. They're in the infant stage of their relationship but
it appears that Ryan is willing to open up - ever so slowly - to Dr.
are gone from his office, Ry will often refer to exchanges
that they had. Later in the afternoon of this appointment, Ry sneezed
and told me, "The wizard was right mom - I had to sneeze." And
remembered that Dr. Sarnes uses a wizard doll to communicate with Ryan
and at one point told Ryan he was going to sneeze. At the time, Ryan
insisted that he was not going to sneeze. I think his comment later
in the afternoon was a recognition that maybe this Dr. Sarnes and his
wizard doll do know something afterall.
feeling pretty decent most of the day. He was eating like a
bird which is only exaggerated by watching his brother Evan scarf down
his weight in rice and meat.
July 13, 2005
are certainly taking their toll. Ry felt pretty crappy from
dusk to dawn. It's a mirror image of Cycle 1. Day 1 was rough, Day 2
was okay, Day 3 went straight down hill and kept going for a few days.
If the past continues to be a predictor, the weekdays should be tough
and then he will make improvements over the weekend only to be
followed by the start of it all again with chemo on Monday. The
second and third week were the hardest because of the painful
urination. We have a game plan to try to limit the bladder issues
this go around. Keep your fingers crossed.
plummeted to 2. His hemoglobin also made a sharp
drop. He was transfused with both - making it another very long day.
He got there at 9:30 am and left after 6:00 pm. Ry was very weepy all
day. In between cries he was usually angry. His blood pressure was
very high - reaching 145 over 101 - and refused to come down even
after given Lasik to flush out some of the volume of blood products.
I left the
clinic after lunch to take Evan to his 18 month physical.
He needed shots which I told Ry about before leaving. I commented to
Ryan that I considered putting EMLA (numbing cream) on Evan beforehand
but I wasn't sure where he would get the shots. Ryan looked at me
very matter-of-factly and said that I needed to give him Tylenol. I
followed Ry's expert advise and Evan bounced right back after getting
July 14, 2005
day for Ry and me. We weren't supposed to go to the
clinic today. It was the day off. But since Ry was having such bad
blood pressure issues, the doc didn't want to give him so many
products in one day. An infusion of a large volume of medicines or
blood products can make your blood pressure go up. They were
concerned that if we waited until Friday that we might have a slew of
things to give him and induce high blood pressure again.
Ry had a
very poor night's sleep - which meant Greg and I weren't
getting much as well. He was quite achy and his mouth had begun to
hurt. Uh oh - mouth sores. The #1 worst side effect outside of organ
failure. I wasn't quite prepared for these. Last cycle he had a
day's worth of minor complaints. He has already surpassed that in
was little sleep, we scraped ourselves out of bed a little
later than ususal, and it was hard to start the day. We didn't get to
the clinic until around 10:30. Ryan was already very clingy and
screaming about mouth pain. The plan was for Ry to get IGG (immuno
gamma globulins - a/k/a antibodies) and make it a short day. It is a
3 hour infusion. It was a busy day for the nurses so our plan didn't
quite go off as planned. We didn't walk out of the clinic until 5:00
pm. It's no one's fault but it stinks for Ry. The worst part is it
didn't help in the blood pressure department at all. He walked out
with a blood pressure of 126 over 101. Ry's primary nurse, Caroline,
has been concerned that there's more to his blood pressure issues -
and we agree. I guess today just proved that.
Ry - tried to have fun during the day. He laughed and
chatted with Chassity and Yuri. He talked with Yuri about her mouth
sores - and his. They discussed what they could eat. He learned from
her about a mouth rinse that might help. He showed Chass some of his
Pokemon and described their powers. But it was never too long before
his mouth became an issue or he was crying from tiredness. At times
he was aggravated with me - but followed immediately by tears of
remorse. As soon as he would say a cross word to me, he would burst
into tears and yell, "I love you, mommy. I'm trying. I'm trying so
hard. I'm not mean. I don't want to be mean." My heart broke in a
million pieces at least 10 times today. I know he can't control his
emotions and has no one to complain to other than me. I did love each
and every hug and kiss I got from him during those remorseful times.
I'll take 'em whenever I can get 'em.
his pain, Ry got a dose of morphine shortly before we left
for the day. On the way home he felt remarkably better - able to
drink without pain - and even had one french fry. For most of the way
home he chatted on the phone with Greg. He told him all the days
events - and from listening to him you would think he had a decent
day. He told him all about Yuri and that she wasn't feeling well - he
said it with such empathy. And he told him that there's a mouth rinse
that should help his mouth - according to Yuri. He told him about the
new chairs - the clinic got new recliner chairs courtesy of Ellen
Degeneres - and how Chassity almost fell off of one when she was
testing out the bed function.
Ry ate okay
for him - that's still a small amount to most of us - only
to throw it all up tonight. Despite the pains and emotional roller
coaster, there were definitely good parts to the day. One high point
was a visit from one of his playmates, Lisa Barnett. What incredible
friends we have.
Ry will go
back to the clinic tomorrow and then have the weekend off.
Then back to the clinic on Monday for chemo and the 2nd week of the
cycle. We'll keep looking for the bright spots even in the cloudiest
of days. Thanks for your continued love, support and prayers.
July 5, 2005
Covering Saturday June 25, 2005 to Tuesday July 5, 2005
escaped me. It's unreal how fast time can speed by.
I rate a
good week as one that has provided lots of joy and laughter
with Ryan by our sides. It was a good week. We had many times with
the four of us that were perhaps considered ordinary by some but
defined as a gift to us. When Evan is tearing up the house and Ryan
is laughing at Evan's antics - I think life is perfect.
had its usual dose of difficult moments for Ryan. At the
time they consume us. In retrospect they were just bumps in the road.
The weekend of June 25th preceded the start of the third week of the
four week cycle. The current cycle is two weeks on chemo and two
weeks off. Ryan's body was showing marginal improvements in recovery
from the first two weeks of chemo. He was still having considerable
pain with frequent urination with small clots and speckles of blood.
No wonder it was painful. We ended up increasing his parameters for
platelets and hooking him up to overnight fluids to try to give his
bladder and urinary tract some relief.
As week three
progressed Ryan's counts began to come in. His white
count had bottomed out at zero despite neupogen every day. He was
getting platelets every other day because they were getting eaten up
as fast as they were being transfused - as soon as they entered his
system they had a location to go and plug - namely, the bladder and/or
urinary tract. He was at the clinic every day but Tuesday in order to
get all the necessary transfusions and infusions. But his energy,
strength and "health" improved with each day. His platelets
getting eaten up as fast and his white count was on the upswing. The
urinary issues were disappearing. A perfect set-up for a holiday
We were scheduled
to go into the hospital for platelets on Sunday but
Ryan's counts were good enough that we were able to avoid that trip.
Instead we played and ate and got ready for a big Fourth of July
celebration. Ryan's eating has done a 180 since his counts have come
I try to
avoid thoughts of life without Ryan but somehow on holidays
and special events I find my mind occasionally drifting to thoughts of
whether this is the last of its kind. Of course in retrospect it is a
sad and scary thought but when it is occupying my thoughts it is a
true motivator. It makes me reach inside and pull out my best. It
encourages me to engage Ryan in play and conversation. I try to drink
every last sip. And I realize I am lucky for the day.
We had a
tremendous day. Ryan is at the end of his cycle and his body
is in the recovery phase. We try to capitalize on these moments.
It was so
normal that it was perfect. During the day Krista and Art
stopped by for a short visit. Ryan enjoyed eating the candy dirt and
ants that they brought him. Greg found a baby turtle climbing in the
grass which provided a playmate for Ryan and someone he could take
care of for the day. Ryan got Art to fill up all the water guns - and
then squirted him with them. In the evening we had a barbeque at our
house with Greg's parents and the Sochas. Evan took a few falls but
bounced right up with his mischievous smile - ready to find more
trouble. Ryan hooked up a couple adults to his new handcuffs -
courtesy of our friend Linda in Texas (thank goodness for the two sets
of keys or I may still be locked up). Ryan and Ben argued about who
got to play with which toy and then cuddled next to each other when
the fireworks were going off. Ryan snuggled next to Papa to eat some
food - mostly from Papa's plate - for some reason other people's food
always looks better, doesn't it? Oma relaxed on the patio and watched
the kids play in the sand box and roam around the yard.
start of Week Four
We are all
holding our breath this week. Since Ryan's initial
diagnosis in November 2003, he has relapsed - without fail - whenever
he has a break in chemo. This is the second week of the two weeks
without chemo. So far no signs of tumors or skin lesions or anything
making us suspicious. I am so grateful. But I may be a little
unhinged this week waiting for it to end without signs of cancer.
is also concerned. She has suggested that if Ryan's counts
permit, we may start the next cycle at the end of this week. I am
torn. I desperately want to buy him this time to feel good and enjoy
it. On the other hand, if his cancer even thinks about coming back,
we should squash it like a bug RIGHT NOW. Unfortunately the crystal
ball is not available.
platelets today at the clinic. His other counts (red blood
cells and white blood cells) are holding up well. We also visited a
child psychologist to help him resolve some of the issues that seem to
be recurring and clouding some of the hours of some of his days. Ryan
is quite reserved with strangers but seems to feel comfortable with
Dr. Sarnes. I am glad to provide a way for him to work out the
confusing issues relating to serious medical treatment.
have surgery tomorrow to remove the central line with the
single lumen. It is an easy surgery - but of course requires the
barbaric starvation until the afternoon. The earliest available
surgery time is 12:15 so whatever Ry ate this evening will have to
tide him over until about 2:30 tomorrow afternoon. The never ending
No one. I continue to bug all the docs to formulate a
plan for life after the re-infusion. What we do know is that we plan
to do one more four week cycle with Gemcitibine and Venerolbine
beginning next week - if not sooner. At the end of that, we will do
scans - a PET and CT - during the week of August 25th.
Ryan's FIFTH birthday on the 31st!!!!
week is when we are supposed to travel to Duke for the
re-infusion of leftover stem cells. In my wildest dreams we will then
make a short stop in Virginia Beach for my work conference. You just
never know - it might work.
. . . ????? I don't like not having a plan - and contingency
plans. I think we need a plan assuming that all things go as well as
possible. We can adjust if we need to but the best plan needs to be
well thought out. I will continue to harass Dr. Horn, Dr. Perdahl,
Dr. Greenberg and Dr. Martin. Look out - I'm on a mission.
all of you who continue to care about Ryan and check on his
website. And a special thank you to those of you who send me
encouraging, thoughtful and inspirational thoughts by e-mail. And last
but not least - thanks a million to those of you who rounded up fun
stuff for Ryan from cowboy stuff to old Pokemon trinkets to Power
Ranger morphers and megazords. I think I can speak for Ryan and say
you all rock.
June 24, 2005
covering Friday June 17 to Friday June 24
has been like many of the recent past - filled with ups and
downs. And each up is worth a thousand smiles.
to Dr. Greenberg today about Ryan's future. He believes the
next 6 weeks will be very telling. They have tried all that they know
to do - there is no identifiable chemotherapy treatment or other
treatment that has not been used on him. That's not to say they won't
put their heads together to think of something new if the need arises.
It's just that this was the end of the suggestions from the experts.
The good news is that this one seems to be working - and it has to.
The two tumors - one on his head and one on his back - that grew as
soon as he was off of Campath disappeared just as fast as they
appeared - not until after they got significantly larger and angrier,
however. This chemotherapy melted them away. Thank God.
ask just about any oncologist and they would say 3 or 4 days
will not make a difference with cancer - that it just doesn't grow
that fast. Ryan has made them all liars. To the medical field, he is
fascinating. To me, he is precious and vulnerable and a survivor.
Ryan is having
a hard time physically and emotionally with this new
treatment. In each day we have seen his sweet spirit but only one day
was without pains and heartaches. Tuesday was the glorious day.
Stomach pains never haunted him - and he ate more than he has in
weeks. I couldn't get him enough food - and when he would ask for
more, he would follow it up with, "So what." At one point he
rolls, rice, beans, slim jim, mac 'n cheese, steamed dumplings and
sardines lined up around him - and then he looked at me and said, "I
would like a chili dog, please - so what." And each time I got up
round up the food he requested, I felt completely happy. Lou came to
visit and Ryan beamed feeling like he had a friend visiting. They
each grabbed a game controller and some sort of Pokemon battle ensued.
another dose of the Gemcitabine / Venerolbine on Monday. He
needed more platelets and red blood cells on Thursday. His platelets
were at 1 - the lowest of the lows. He had a splitting headache until
after he got a big bag of platelets. I know he has gotten these type
of headaches when low on platelets but I felt a lump in my throat
building when I remembered those same type of headaches that he got
when the cancer went into his central nervous system. He woke up not
being able to walk because he had tremendous leg bone pain. Today we
spent the day at the clinic for him to get IVIgG (antibodies).
to Dr. Perdahl, Dr. Horn and Dr. G were all about what's
next? What's on the horizon after these 2 cycles and the re-infusion?
They don't know. I want them to keep their sights firmly on the new
donor cells and cultivating them. But we all agree Ryan needs some
sort of coverage with treatment because those new cells are too
infantile to do the job on their own. And his cancer doesn't wait for
anything. Dr. Greenberg said that if these drugs continue to work
over the next 6 weeks that we would then perhaps review it and try to
cut back to some degree so that he could have a more normal enjoyable
life. He commented how it gets too hard to come so much to the
clinic. I told him I'd take this for years if this is what keeps him
here. And I mean it. As hard as some of the moments have been this
week, the minutes or hours that are good are worth the whole thing.
Honestly. Don't get me wrong - I feel frustrated when he cries and
screams for no reason. But I've enjoyed being his mother this week
and I feel lucky that I get to comfort him with a back or foot massage
when he feels achy. I hold him and try to envision the bad cells
being pulled out of his body and released into the atmosphere. I
still have complete faith that he can be healed. And I wish and pray
for it with every breath I take.
Some of you
may wonder how our friend Frannie is doing. She was
transferred to the PICU (intensive care unit) this week. She was
improving to the point that she was getting ready to be released when
she built up too much fluid around her heart and then had breathing
troubles. She is improving but still in the PICU. Please keep
Frannie and her family in your thoughts and prayers.
thank you to those of you who sent Ryan some old Power
Ranger stuff - every one brightened his day. I don't know what magic
those Power Ranger morphers or Pokemon little plastic figures hold,
but I do know that they have seen him through some rough days.
June 10, 2005 to June 16, 2005
results of the liver biopsy showed that there were active
lymphoma cells remaining in the tumor. The group of doctors here met
and consultations were made with Dr. Sandlund and Dr. Trippett - both
renowned experts in Large Cell Anaplastic Non-Hodgkins Lymphoma. The
group recommendation was to switch to Gemcitabine / Venorelbine
In some respects,
I was heart broken. I don't want his counts to dip
so low for prolonged periods for many reasons. The tremendous risk of
infections - especially in a recent post-transplant patient - are
In fact, Dr. Greenberg said, "We will expect him to be
sick. If he is not, that is a bonus." Ry will also be forced to have
more contact restrictions with the outside world. I have loosened
many of the rules as of late because his future is questionable and I
want him to enjoy all of life's experiences. I will hate the new side
effects that come along with these particular drugs. The common side
effects include nausea / vomiting, fever like symptoms, aches, mouth
sores . . . just to name a few.
We also discovered
during Ryan's examination today a new lump on his
back near the middle to left shoulder blade and a bump on the back of
his head. Both seem to be fairly close to the surface - right beneath
the skin. The one on the back is small at this point at the one on
the head is bigger in diameter. Of course I hate seeing anything. It
is presumably cancer.
But we know
we weakened the cancer with the Campath. I became at
peace with the new treatment decision when I realized we must strike
when this insidious cancer is weakened. We can not sit by and let it
make the next move.
plan is as follows. Two cycles of treatment followed by a
re-infusion of the leftover stem cells at Duke. A cycle consists of
two weeks on and two weeks off treatment. During the two weeks on
phase he will get the Gemcitibine / Venerolbine with neupogen support.
That means he will get the neupogen shots on the days off of the
drugs to boost his white count. This is ordinarily done when the type
of chemotherapy treatment is very devastating on the bone marrow
production. These drugs - especially with Ryan's new fragile stem
cell production after transplant - do just that.
transfusions today - leaving the clinic in the late
afternoon - we stopped by home to take Dopey out and then made our way
to the Sochas. It's nice to have such good friends.
June 11, 2005
The day started
off a little sketchy but drastically improved when the
four of us made our way to my boss Dan's house in Stafford for a party
with the work crew. I miss them tremendously. They are family. Ryan
had an exhausting but very fun time. He walked all over the grounds
trying to spot the cows - and needed only a little lift now and then
by Greg. He loved that his friend Riley was there and felt so proud
when he could show Riley his power ranger zord. But he may have had
his most fun was when he threw a water balloon - or 2 - at me.
An all around
incredible day. Much of the credit goes to our friends
the Fontanillas and a really special guy named Brian So. Brian is the
owner of a Taekwondo gym in Chantilly called Highkicks. The
Fontanilla boys, Diego and Tony, are members. Angie - their mom -
arranged for a private lesson for Ryan. Ry wanted Diego and Tony to
join in to make it more fun. The 3 of them showed up Sunday morning
at the gym and Brian - the owner - conducted a whole class just for
Ryan. Brian and his crew stayed late the night before to wipe down
the whole place. I was slightly nervous at first because Ryan can't
jump or squat and I was suspicious that he could not kick at all
without falling on his back.
treated Ryan with great respect. He conducted the class
like he would any other but made sure he was nearby if Ry needed
assistance - all without drawing any attention to any of Ryan's
limitations. Ryan surprised all of us when he lifted his little legs
up to kick and didn't fall over. Ry made his own accommodations for
the times when he was supposed to jump or crawl under a bar - and they
all worked. He does sort-of a speed walk in place of running which
gets him there plenty fast. Ryan is a follow the rules kind of kid -
if Master Brian said stand on the circle - he stands on the circle.
Little Tony provided great comic relief and entertainment. He is not
so much a follow the rules kind of kid but more a free spirit. Ryan
got kick out of him - he and Master Brian would exchange amused and
exasperated looks at each other when Tony would bounce around in all
of the lesson was when Ryan would do an especially
good 1-2 punch and then turn to his dad with both thumbs up.
And in fact,
Master Brian told Angie that it was free unless she had a
million dollars. What makes people so good and kind?
At the end
of the class, Master Brian made a big deal to announce that
one of them had earned a belt. He told them that it was the first
time in the history of his school that someone was able to earn a belt
after just their first class - and he then awarded Ryan a white belt.
If anyone wants to join a Taekwondo gym that is really fantastic, you
can get more information from their website at www.highkicks.us.
Day 1 of
Gemcitibine / Venerolbine. The bad news is that the lump on
his head is slightly larger and the bump on his back is way bigger and
very hard. This disease is maddening. The drugs were not without
their side effects. Ryan was very tired and lethargic all afternoon.
We kept away any bad vomiting with drugs but had an episode of what Ry
called "vomit problems". He got a temperature in the evening
all around yucky. I had to keep telling myself that we want these
drugs to wreak havoc in his body so this is not an all bad thing.
Tylenol was able to get him through the night without another fever.
best part of the day is when Uncle Chris made a surprise
visit. Ryan adores him - and I am not exaggerating when I say that he
clings to him when he is near. The guys stayed up late playing some
sort of Mario Brothers Gamecube battle game. And Ryan fell peacefully
to sleep knowing that he could wake Chris up in the room next to him
in the morning.
shine bright and early, Christopher. Ryan's ready to play.
The day was one big playdate. There were a few times that Ry didn't
feel well but overall he was soaking in Uncle Chris. They played for
hours in the car - Ry discovering the windshield wiper fluid - and
later they parked themselves in the back of the van and made lego
creations. Ryan saves up some of his hardest lego boxes for Chris to
In the late
afternoon, Chris, Ryan and I took a trip through
McDonald's drive thru for an adventure. Ryan hasn't been especially
interested in eating in the last few days so once I saw him munching
on fries and nuggets, I took the scenic route and drove for well over
an hour to give him an opportunity to eat as much as he could. I was
thrilled that he polished off 3 chicken nuggets and about half of a
cheeseburger. I can't begin to tell you the torture you feel when
your child has absolutely NO interest in putting a morsel of food in
his mouth - and the complete extreme opposite feeling when he sinks
his teeth into ANYTHING.
the evening Greg's (and Ryan's) friend Lou stopped by for a
visit. Ryan was loving every minute. At one point it was "boy's
room" in the downstairs play area and only he, Chris, Greg, Lou and
Evan were allowed down there.
June 15, 2005
couldn't stay forever. We can't leave sweet Angie home
alone forever. Ryan was actually feeling pretty poopy most of the
day. Again, he ate an immeasurable amount of food - and that was what
we could force in - maybe 1/4 cup total for the day. It's hard to
watch the bones stick out further and further until you can see the
outlines of his little skeleton. The megase is not doing all that I
want it to but I really don't want to move on to TPN unless absolutely
necessary. It's hard on the liver. And the 2 chemotherapy drugs he
is on mess up the liver functions - and of course we just discovered
that he has some amount of active lymphoma in his liver. I do not
want to tax that organ any more than we have to.
on Ryan's head is getting smaller - yeah! The one on his
back is big and angry and red. My take on it is that there is a lot
of activity - an attack is being mounted against an area that was just
flourishing with ugly cancer cells - the battle is on.
June 16, 2005
on Ryan's back is getting smaller - happy days! The one on
his head is nearly gone and the ones under his right ear that we've
been watching since coming back from Duke have nearly disappeared.
Happy, happy days. Ry needed both blood and platelets today at the
clinic which led to a rather long day. We got home around 6 pm. But
the day really flew by - thanks to our friends at the clinic. For
Ryan, a fabulous visit was with our good friend Michael Bean. His mom
Karen and I became friends during treatment over last fall until our
departure at Duke. She sent me real - handwritten - letters when we
were there that brightened my day. Michael is one of the absolute
sweetest and greatest kids on the planet. He and Ryan have many
similar interests. Ryan could sit for hours right next to Michael and
watch him play on his Gameboy. They used to have power ranger battles
with figures in the play area. Michael is now done treatment and
doing fantastic. He had a scheduled check up today. And then it was
like Christmas. Michael showered Ryan with a huge - HUGE - bag full
of toys that he no longer plays with but thinks Ryan would enjoy.
Ryan didn't know where to begin. The two of them took apart and put
together the zords all afternoon. Michael was finished his
appointment at least a couple hours before he left. It was really the
only reason that Ryan wasn't hitting rock bottom in the afternoon.
The time - and platelets - and blood - flew by. And when Ryan saw
Michael eat a slim jim, he ate a slim jim - the first thing Ry put in
his mouth all day. Michael, his mom, and his sister stayed until we
could leave and walked out with us. It was so wonderful to catch up
with them and see them.
I usually can squeeze in social time at some point. I'm not
sure what I would do without Margy. And my sweet Caroline the nurse
is always there to take care of me - and Ryan. And I always look
forward to hanging out with sassy Chasity and her mom Carrie. I love
Chas and her undying spirit. She is also a patient at the office.
How is it that all the best kids end up in that office?
ended a little strained because Ryan was an emotional wreck.
I'm not sure if the medicines are doing it or fatigue (which could be
caused at least in part by the meds) or lack of food or depression.
He broke down and cried for well over an hour about Onyx, the dog he
used to have. He was sad at the drop of a hat and weeping and mad and
sad all over again about everything and nothing. He finally hid under
a pillow and drifted off to sleep. A not too terrific ending for an
otherwise terrific day.
to the clinic tomorrow for IVIG and pentamidine. And
hopefully a peaceful, relaxing and fun weekend.
June 4, 2005 to June 9, 2005
of the liver was done on Tuesday. There are still results
pending in the testing as of this Thursday evening. The initial tests
indicate the cells are dead - still unknown if they were some type of
infection or lymphoma, however Dr. Horn thinks it more likely to be
lymphoma since we did nothing to treat an infection. If the tests
show active lymphoma, we will have to kick up the treatment. We are
reluctant to do so because it could wipe out his bone marrow and
threatens the graft of new cells. It also increases the risk of
additional infections. And last, it may suppress any new cells
ability to fight on their own. But, we don't want the tumor to beat
us either. It's like walking a tight rope with no net underneath.
The DNA test
results came back. Ryan is all donor cells! We are
elated. What does that mean? Some unselfish and generous parents
donated their son's cord blood when he was born - we no nothing of the
donor other than he is male. Inside cord blood is brand new stem
cells - the starter cells - the ones that learn to be all the cells in
your body - your red, white and platelets. When Ryan became a
transplant candidate, a search was done to find a match and it was
this boy's cells that were the best match. Almost two weeks ago we
sent a sample of Ryan's blood down to Duke to check the composition of
his blood - did Ryan's cells return and if so, to what degree. The
answer: no recipient cells (Ryan's old ones) were detected and only
donor cells were found. None of Ryan's have returned. New cells are
one of our biggest weapons against cancer. That composition can
change - Ryan's old cells can return - but the longer it remains all
donor, the less likely it will change.
Weekend of June 3, 4, 5, 2005:
Friday night Ryan had a couple visitors, Diego and Tony
Fontanilla. They found the power ranger cabinet and took off in all
directions. For whatever reason, Ry was up all night beginning when
his pump beeped. He is on an IV medicine that ends generally around
1:00 am. I guess when the pump alerted that the medicine was done, it
woke him up. I was in and out of consciousness and trying to keep an
eye on him. I was able to delay his hunger until 6:30 and then I was
up making Easy Mac - and thankfully the stuff is true to its name.
The truth is I was delighted to have him eat something.
After a good
morning nap, Ry had a short visit with his buddy Ben.
Ryan was quite "take charge" (translated as bossy) and tried
explain to Ben why he wanted to do exactly what Ry wanted to do.
Luckily Ben is fairly adaptable and joined in on the power ranger
action and then was rewarded by Ryan when he let Ben play Ry's Star
Wars legos X-box game.
seemed to be taking a hit - maybe by the treatment, scans
and procedures of the week prior as he took yet another nap. We are
trying to be vigilant about possible infection since Campath is
associated with serious infections and we know that there was
something seen on the liver - maybe an infection. Ryan had complaints
of jaw pain when he was awake but nothing else.
Ry had some serious jaw pain again. It was thought to be
most likely associated with the daily shots of neupogen that he is
getting. That is the medicine that is injected under the skin for the
purpose of stimulating growth of white blood cells. It can cause some
serious bone pain. His pain seemed to resolve with a good dose of
Tylenol but there was a little nagging fear that there was more to it.
Ry was also feeling quite moody throughout the day. He wasn't able
to get into the happy groove. We tried to entertain him but not much
June 6, 2005
moving at a snails pace at the clinic. It was one of
those days that a gazillion kids needed blood products - red blood
cell transfusions, platelets, plasma, you name it. Ry needed to get
platelets to beef up before his liver biopsy. They wanted the number
to be really high because the liver is very vascular (lots of veins
and veins carry blood). They also had to draw blood peripherally
(that means they can't use his tubies and had to stick him in the arm)
to run a coagulation test before the liver biopsy to make sure his
blood was clotting okay. Ry was fairly happy-go-lucky and playing at
the play table until we dropped the bomb that he had to have a pokie.
He was anxious and upset until that was done. He was given the option
to have the numbing cream on his arm which takes at least an hour to
do its job but he chose not to have it because he didn't want to sit
around worrying about the pokie for an hour. In typical Ry form, he
screamed at the top of his lungs but stayed perfectly still while Ann
fished for a vein with a good size needle and then filled several
vials with blood.
were still at completely 0 - which made us worry that
the jaw pain was not from the neupogen because that bone pain occurs
when there is rapid multiplication in the bones of white blood cells.
Since he had no white blood cells, it was an easy call to say he would
not get any Campath.
saw Ry since one of his primary docs was on vacation and
the other at the hospital. I decided to pick his brain as well. Dr.
G is not completely hip with continuing Campath - at least this
frequently. He thinks it has a short life because it can go in and do
its job - which is killing all the CD 52 proteins - many of which are
attached to tumor cells and thereby killing the tumor cells - but then
some cancer cells remain. Campath, as we've known all along, is not
generally associated with a cure. It has mixed results - some have no
response, others have a partial response and very few having a
complete response. He was encouraged that Ryan's tumors seemed to be
either shrinking or disappearing and that the bone marrow, skin and
spinal fluid all tested negative for lymphoma. Clearly, Ry has had at
least a partial response and potentially a complete response. He was
quite surprised and pleased to see that the DNA test showed that Ry
had all donor cells. He wants us to back off Campath and only do it
once a week, if that. He has never had a patient on such high dose
Campath and is concerned about what is may do - first evidence is the
fact that it has emptied out Ry's bone marrow. Prior to transplant,
his marrow was about 85% full and now there is less than 1% in there.
So few cells to keep the body running.
All the docs
would agree that we are treading new territory with Ry.
There is no protocol to follow and no way to know how the disease or
his body will respond to any kind of treatment.
June 7, 2005
We were up
bright and early to go into the clinic to get a count check
to see if Ry needed additional platelets before the biopsy. He had
his absolute worse exam to date. He was very uncooperative with Dr.
Weil and screamed and squirmed the entire time. I feel bad because
part of it has to be that we told him last week that he was not going
to have to have a day of starvation again for a long time. I should
have known better but it didn't occur to me that last week's tests
would lead to this.
out he was just above the limit of platelets needed for his
type of procedure so he didn't need to get more - but it also meant we
needed to kill 4 hours without food or drink until his scheduled liver
biopsy. Too bad I didn't stick with tap dancing when I was a kid. We
took the scenic route to the hospital which is just a stone's throw
from the clinic. A couple hours later we parked in the hospital
We had a
fantastic line-up for the procedure - and it's all quite
random. We were really lucky. Dr. Foley was the anesthesiologist and
Dr. Butch was the radiologist who did the procedure. At this point I
pride myself on picking out the good ones right away - and I knew in
an instant we had 2 of them on this day. Both were not just willing
but eager to accommodate Ry's particular needs. As for the procedure,
Dr. Butch was able to find one of Ryan's lesions on an ultrasound and
was thus able to perform the procedure with an ultrasound and not a
CT. There were several huge benefits. First, you can watch the
needle on the monitor and see it actually go into the lesion. With
the CT, you take a look at the scan which helps guide you but then you
must blindly go in and try to poke the lesion - and given the small
size of this lesion - there is a decent chance of a miss. It is also
a much bigger production to use the CT equipment with an operator for
that machine and the location where it must take place. Dr. Butch
estimated it would take easily 5 times as long if the CT was needed.
The ultrasound is a much better method if you can use it. Sometimes
it's not an option because the ultrasound can't see deep in the body
like the CT and so sometimes you simply can't see the spot you're
looking for. With a long needle, Dr. Butch took 3 bites out of one of
the liver lesion for testing. He told us that there was an unusual
finding of histiocytes which often indicate infection. We later
learned that histiocytes are sort-of mop up or clean up cells so they
really don't tell you what was there - only that it is gone.
procedure, Ry had to be monitored for a couple hours since
there is a risk of bleeding. At first he didn't like that idea but
soon he had some of his Digimon figures out on the bed and was engaged
in serious battle with Greg. "Biyomon digivolved to Ikakumon"
something like that. He talks so serious and animated when he calls
out the name of the Digimon and shouts out that he is evolving into a
new character. It's like that guy's intonations that yells "Let's
ready to RUMMMMBLE." You can't help but smile when he's entranced
under the spell of Digimon. In the recovery area, there are curtains
that separate you from the next soul recovering from some procedure.
After the lady recovered next to Ryan, she pulled the curtain back and
told us that she wanted to see who owned the voice behind the curtain.
You could tell she and her family member had enjoyed listening to the
exclamations of a sweet child. I can only imagine it helped her
recover as well. Ry had no pain or bleeding and told the nurse no
less than 10 times that he was ready to go home. Finally she made his
wish come true and we were set free. Ry was supposed to take it easy
and not take stairs on his own or do any type of physical activities
so we cuddled together for the evening.
June 8, 2005
Back to the
clinic in the morning. Ry got IVIGG only. His ANC jumped
to 1700 which is actually artificially high when you're on neupogen.
It generally goes down about 2/3 after neupogen is stopped. It was
decided to do one more dose when we got home from the clinic and then
stop so that Ry can have some type of treatment - either Campath or
something else on Friday - they need 48 hours between neupogen and
results of the liver biopsy were inconclusive. The most
that could be determined is that there were dead cells in there. As
mentioned, it is less likely to be an infection since we did not give
Ryan any type of medicine to kill an infection. The additional
testing and special stains are more precise and hopefully will be able
to give us answers. Those of course take at least an additional day.
There is a definite possibility that no tests will be definitive. If
no active lymphoma can be found, we are all comfortable continuing
Campath on a much reduced schedule as a maintenance drug at least for
the short term. But if it shows active lymphoma, Dr. Horn thinks we
have no option but to start Gemcitibine / Venerolbine right away. I'm
not so sure I'm there yet. I think one of our biggest weapons are the
new cells and doing the heavier chemo combination will certainly
threaten the existence of those cells. I am hoping a lower dose
chemotherapy can be used - even Campath on a less frequent basis. The
trick is to do the least necessary while keeping the cancer in check.
This is really where my prayers kick in. Every night I put my hand on
Ryan's head and ask for his healing. I have never before been so
expressive and vocal in my requests but I feel a compelling force
encouraging me. I feel Ryan's blood run through my veins and know
that his is a life worth healing.
June 9, 2005
A day off
- ahhh, what a relief. We all slept in and then had a
leisurely breakfast. After that, it was off to a matinee movie,
Madagascar, with Ryan's friend Ben. It was a real treat. I have
never taken Ryan to a movie in a movie theater. He has only seen 2.
The first was Nemo when he turned 3 - a couple months before his
diagnosis - with his halmony (grandmother). The other was his recent
adventure to the Star Wars premiere with Greg. He reminded us all
that we are supposed to be quiet at a movie theater - only one
problem, he must not have realized that the rule applied to him! He
really wasn't bad - but when something happens that he wants to talk
about, he shouts it out for the whole audience. "Disgusting!"
the lion bites the bottom of the zebra - And a few other observations
that he made just in case you didn't get it or weren't paying
a little more tired than usual but has been loving and
playful while awake. And of course he always has energy to surf the
net with his dad. They say growing cells is hard work and saps your
energy so hopefully his cells are growing back again in full force.
We have seen some of the telltale redness in his legs and face today.
His eating has picked up tremendously thanks to the introduction of
Megace beginning on Tuesday evening. Megace is a manmade drug that
stimulates appetite. He had dropped nearly 5 pounds since returning
from Duke - and that's quite significant when you start out around 35
pounds. Evan is closing in quick. But in the last 3 days, Ry has
eaten 4 crabcakes - yes, his favorite of late - and a lot of peas. I
love it, love it, love it when he says he's hungry and then actually
follows through and eats!
we will return to the clinic - certainly for platelets but
for what else we have no idea. Dr. Horn had said she'd call me if she
got any more results today from the liver biopsy so I assume there
were none. As I sit on the eve of a potentially new era of treatment
for Ry, I think about the many observations, prayers and good wishes I
have received this past week from those of you who visit this website.
Just when I feel sort-of alone, I hear from those of you out there -
giving me strength and courage to face the new day. I often sit at
the computer and write this journal to me - and me alone. It is great
therapy for me. I do not often express my deepest feelings out loud.
I have always been an ear for others but I rarely let those same
feelings in me come out in words. I think it has been one of my
greatest weapons in staying strong - when I talk out loud about these
things, I start to crumble. It is my mechanism to cope and get
through each day. This outlet - this journal - has been a powerful
tool for me because it can be dangerous to bottle it all up. And now
I gain so much more from my own journal - the gifts from friends,
family, and strangers - in your words to me.
I am savoring
the words from yesterday of a mom of another patient at
Ry's doctor's office. Zelly's mom told me that what is eternal is the
bond that you make with your family members. Nothing and nobody can
take those away. She also told me that if ever I think I can't get
through a day, I should remind myself that I made it through
know how my words affect most of you out there. I am
grateful if Ryan's story or Ryan's life as told by me has touched
anyone out there. If ever you need your faith in man / woman
restored, consider these:
roommate Debbie, a teacher, had each kid in her class send
a letter to Ryan wishing him good luck, that the force be with him,
Godspeed in healing, and more. We've gotten probably 20-some letters
in the mail in the last 3 days.
My dear friend
Barb delivers lunch to the clinic as many times as her
life allows each week.
acquaintance Lisa, a teacher, sent a picture of her class
holding up a sign for Ryan to get better.
another bike for auction to benefit Ry. If you remember,
there were teams competing across the country making bicycles out of
donated, used, and new parts. It's on e-bay right now until Sunday
June 12th. You can see it at THIS LINK
A college friend Ami sends a card once a week to Ry with a gift card
inside for Toy Power - including a cool Darth Vader card that has a
light up light saber imbedded in it and plays the Darth theme - all in
the midst of Ami giving birth to child #2 and raising a toddler.
I have gotten
several people - from Stafford, Virginia to California -
wanting to give Ryan some old power ranger stuff.
whose friendship grew out of this website - continues to
send me inspirational thoughts and stories. There is a woman who
should write a book to inspire and help others.
dad of a patient at Ry's office, told me he cut and paste
part of my journal talking about the need for platelets into an e-mail
he circulated amongst his co-workers. To think that people actually
read my journal and take action upon it is overwhelming.
are just examples from the last week or two.
I do not
know what tomorrow may bring, but I know I made it through
today - and enjoyed it. I have said many times to myself that I can
not worry about tomorrow's train wreck - if there is going to be one,
I will deal with it then - but I can not worry about something that
may not come lest I want to miss the beautiful day I have in front of
beautiful day. Warm regards,
26, 2005 to June 3, 2005
Day 99 to 107
By Endurance, We Conquer.
of the week:
the Day 100 milestone this past week. While not creating
the fanfare it would have without the relapse, we are happy to make it
to the landmark day. I am filled with hope and fear. They take turns
swelling inside me. I want to live with the hope but at times my gas
tank is running low.
news: The bone marrow biopsy shows no cancer in the bone
marrow. The skin biopsy determined that the skin lesions were not
cancer. The spinal tap found no cancer cells in the spinal fluid.
news: The scans indicate 3 spots on his liver. It is
50-50 whether it is lymphoma or infection. Either way, it is
dangerous and scary - but not insurmountable. We are scheduling a CT
guided needle point biopsy for early next week. It will determine
what the spots are and which path of treatment to take.
May 26, 2005
A very pleasant
day. The first and only weekday that Ry did not have
to go to the clinic. We spent a good deal of time playing outside
with the dog. I took Evan to his doctor's appointment which was quite
encouraging. His spleen is no longer enlarged and the lymph nodes -
while still palpable - have reduced in size. We still plan to do the
CT to examine the nodes by scan but for now all evidence points away
from Evan cancer and towards only mononucleosis. He was also later in
the week diagnosed with bronchitis. Although it means we have to try
to keep the boys separated, I can't even begin to imagine a different
May 27, 2005
It was the
longest day ever at the clinic. We got there at 9:30 am
and left about 8:00 pm. I think it's a record for us at the clinic.
Ry needed IVIGG (antibodies), platelets and Campath. None of them can
be run at the same time because of potential infusion / transfusion
reactions and they each take a couple hours or more to infuse. The
day had its ups and downs.
is a familiar place. For Ryan, it is something to do
instead of long bland days at home. If you're home day after day for
the whole day and are not allowed to go anywhere other than the
backyard, it gets monotonous. So for some reasons it is good for Ryan
to go to the clinic. He plays with other children and interacts with
other people. We are comfortable there and love the people who work
there - I'm particularly partial to Caroline, a witty nurse from New
Zealand - and two of my favorites from the hospital that have joined
the clinic staff, Kelly and Kimber. But - regardless of the
entertaining people and activities - by 4:30 in the afternoon, Ryan is
done. His little body had been assaulted by Campath and taxed by the
IVIGG infusion and platelet transfusion. He's seen everyone else come
and go. He is tired. You can't blame him - yet it's hard to be
around a child who is totally inconsolable and angry. Not one of my
distraction tricks were working - and I was tired. I found myself
feeling irritated and felt bad for feeling that way. By 7:00 pm, he
could say nothing but "I want to go home" at the top of his
lungs. The fact that we and all the nurses joined in that refrain did
not make him feel any better.
he rallied and we had a good time. He just wanted to be home.
May 28, 2005:
We were off
to a rocky start - Ryan started the day
uncharacteristically sad. It's easy for us to ignore the big picture
when we're in the daily grind but I think Ryan is at the age now that
he has unanswered questions about his life. At first I thought he was
acting out and then I realized there was something much deeper. After
I coached him to express his feelings, he started blurting out all
sorts of random things that he was sad about: why does he have to
always go to the doctor's office; he misses Onyx; a couple kids at
school (mind you, in September 2003) hit him.
toll was hitting hard.
But the day
had a great ending - thanks to the spirit of a child. We
made our way over to the Sochas house and went to the park near their
house. Ryan hopped all over the equipment and felt like any other
kid. He closed his eyes on the swings and felt the air swish by
underneath him. He didn't have a care in the world. The topper to the
day was when we returned home, we were met by Chris and Angie. They
came to visit over the Memorial Day holiday and not a moment too soon.
It's hard to explain Ryan's affinity towards them. Whenever Chris is
sitting, Ryan is in his lap. If Chris is eating, Ryan is hungry.
Whatever Chris says is the gospel. And he adores Angie as well. She
is so attuned to his thoughts and feelings and instinctively knows how
to respond to him.
May 29, 2005
The day started
off with Ryan getting sick. We still can't put our
fingers on the cause but for now we assume it is just that his body
has been put through so much and his stomach is sensitive - perhaps
some graft vs. host affect. It's a reminder of the trauma to his
little body. Getting food in him is nearly impossible these days.
It's so hard not to push and push food on him - which is all very
annoying to him - as it would be to anyone. I'm trying to let his
hunger kick in but I'm not sure it will if I don't coax him.
We had a
chance to go to my sister Amy's house along with all the rest
of my family. What a treat for all of us to get together. Ryan
adores the younger ones and is caught regularly saying, "Ahhh, how
cute." He also admires his big cousins and feels like such a big
around them. His physical limitations from transplant and his age
don't allow him to keep up all the time but there was plenty of time
spent playing "Ryan activities" like sitting on a blanket in
playing with his little figures. I know it's got to be hard for
Daniel and Brady to understand why all this attention is spent on Ryan
and why all the adults push them to do what Ryan wants to (and can)
do. I'm always amazed when they set aside what they would rather be
doing and take time to do something Ryan wants to do. And of course
all the adults - Lisa, Kenny, Amy, Dave, Art, Krista, Rachel - are
always trying to fill in the gaps by acting out their childhood days
with Ryan. Each one of them spent special time actually playing with
May 30, 2005:
We had a great day - much of it spent playing and
eating at Oma and Papa's (Greg's parents). Ryan was still soaking in
Chris and Angie. Despite all the medications and low blood counts,
Ryan outlasts all of us. When we were finished eating, we all wanted
to lay out on the floor or couches for naps but Ryan was rearing to
go. Off we all went to take Ryan and Evan to the nearby playground.
I'm struck by how Evan has greater physical capabilities to climb on
the equipment than Ryan. No matter - Ryan was more interested in
laying back in the swing - oh, King Ryan.
May 31, 2005:
Off to the
hospital at 7:30 am to try to squeeze in platelets, a PET
scan, and Campath. The first of two days that I had dreaded because
of the starvation factor for Ryan. He was not allowed to eat or drink
until after the PET scan. There were low points and high points to
the day. To be honest, I did not have much faith in the hospital to
pull it all off. Lucky for us, we were assigned a nurse named Kat who
is so on-the-ball. But even with a great nurse, the hospital red tape
is usually cumbersome and overwhelming - throwing curve balls from all
angles. Surprisingly, that part of the puzzle worked smoothly - it
was a scheduling snafu that nearly made the day unravel. At around 10
am we learned that the 11:30 PET time had never been confirmed by the
office so he was not on the PET schedule at all.
It was a
very rare mistake by Ryan's doctor's office. But one that
could have a great affect on Ryan. PET scans are only done in Fairfax
on Tuesdays because they do not have a PET scanner - they contract
with a company who brings the PET scanner in a trailer which is parked
outside of the hospital. In fact, there was a time in the recent past
when young children who couldn't stay still for hours unless under
anesthesia couldn't get a PET because the anesthesiologists didn't
want to go outside the building with patients because of various risks
and liabilities. Sounds nutty but that's how it is. Anyway, by some
stroke of luck, they squeezed him in between a couple patients, found
an available anesthesiologist, and scraped up some radioactive
isotopes (the solution that needs to be injected) all by 2:00 in the
afternoon. There was a delay which caused some distress and suffering
for Ryan but not overly hideous in the whole scope of things.
completely happy and pleasant. His only complaint was that
they ran an IV in his hand and the site hurt. We had forgotten that
they couldn't use his central line to inject the isotopes so it was a
surprise for him to discover he had a pokie. He scarfed down more
food than I had seen him eat in days - the ONLY benefit to telling him
he can't eat is that when you tell him he is now allowed to - he feels
like he has to take advantage of it. I was thrilled to see him eat.
We then made
our way back to the hospital room so he could get the
Campath. We spent the next few hours fairly pleasantly. The
highlight being when Lou, Beth and Allie stopped by. Ryan really
enjoys Lou and we all enjoyed some fresh air out on the patio on the
5th floor designed for the kids in the hospital. The evening went
much more smoothly then the first half of the day. We left the
hospital around 9:00 pm and stumbled into bed shortly thereafter.
June 1, 2005:
out to be one of the hardest days of late for me. It
started when I got out of the shower around 8:00 am and Ryan was
sitting in the hallway with a large piece of corn bread wrapped up in
front of him on the ground. I asked what he was doing and he started
crying saying that he was hungry but wasn't allowed to eat. My heart
began shattering into pieces. This was the day I fought so hard to
get an earlier appointment but failed. The scans and procedures were
not slated to start until 1:30 and so he was not allowed to eat or
drink until after they were all done - turns out about 6:00 pm.
We kind of
got into a groove drawing until it was time to leave. Then
Ryan wanted to know if he was going to have any pokies. Of course I
can't lie to him but I knew he wasn't going to like the answer. Yes,
I told him, he was having a spinal tap. He immediately began to cry
because he remembered the spinal in Duke that he had that was not
under anesthesia - the emergency weekend one that Dr. Martin
performed. He rehashed that whole day with me. I told him that this
one would be different and that he wouldn't feel this one when it was
happening because he would be asleep. He was not convinced. I tried
to re-frame the procedure by explaining that they would only take a
sample. This seemed to make him feel better. What I did not explain
in detail is that they were going to cut off a piece of skin and
remove small pieces of bone from him as well. Once awake, he would
consider any "pokie" to all be wrapped up into one so I saw
in describing all the nitty gritty details to scare him.
didn't begin until 2:30 pm - red tape with registration -
something I could get up on my soapbox about. And the first scan -
the CT of the neck, chest, abdomen and pelvis - was decided last
minute to be done without anesthesia. Thankfully he did fine with
that although he didn't love it.
hour later, he was put under anesthesia and Dr. Horn
performed the skin biopsy, bone marrow biopsy (taking 2 samples of
bone - one from each side of his hip bones in the back) and the spinal
tap. Then he underwent the MRI of his brain and orbits. Sometime
after 5:00 we were retrieved from the lobby by a guy who told us that
Ryan was awake and screaming. When I got there, I knew he was
experiencing pain. The all too familiar sounds and looks. The bone
marrow biopsies were creating deep pain. After some morphine, he
began to improve but was very upset. I had to remind myself that the
pain would be temporary. As soon as he learned we were heading home,
he gave us a big smile and asked for a popsicle.
by the oncology floor to pick up a prescription from Dr.
Horn for tylenol with codeine. I asked if she knew anything about the
PET. She told me that it was not clean and listed a few discreet
spots - not completely widespread. Nevertheless, my heart sank a few
inches in my chest. She didn't want to make any conclusions until she
could see it in conjunction with the CT, MRI and biopsy results. She
told me about a potential spot on the cerebellum and some other areas.
Strangely enough, the places where we have been watching the tumors
shrink did not light up on the scan at all.
at Ryan and saw how good he was doing - stronger than ever,
more mobile then ever, smaller palpable tumors - I felt like the
results were not so bad.
June 2, 2005:
I awoke to
Ryan vomiting in the morning. It's so random which adds to
my anxiety. We made our way into the clinic. Ryan got IVIGG and
Campath. Again, a long day - starting at 9:00 and finishing at the
clinic at 6:00.
For the first
time since his white count came in at Duke, his ANC
dipped down to "0." The ANC is the calculation of mature and
white blood cells representing the functioning of his immune system.
I was quite alarmed. I had thought that Campath was easier on the
white cell count which had also been bourne out by the fact he has
been on Campath for a month with a good ANC. Dr. Perdahl assured me
that Campath can do that - all of the sudden wipe out the bone marrow.
The quick review of the bone marrow from the biopsy confirmed that it
was basically void of anything - nearly empty. That early review thus
could not tell the doctors anything about malignancy in the bone
marrow so the special stains will be the needed for that result. As
for the cells being wiped out of his marrow - the biggest fear in this
department is losing the graft of new cells. They are some of our
little fighters and we need them to stick around. Losing them would
mean that the transplant was a complete failure (not to be confused
with a waste of time because it was definitely worth doing it) and we
certainly don't want to lose the benefit of the new cells.
brick we were hit by was that both the PET and CT showed
spots on his liver. There are 3 spots seen. There is no way from the
scans to know exactly what it is. The most likely answer is either
lymphoma or infection - and a very outside chance of being neither.
From looking at a picture, there are no characteristics to be seen
that would lead to a conclusion of one versus the other. I could feel
fear creeping in and filling me up. The recommendation is to biopsy
it by using a fine point needle guided by a CT scan to aspirate a
piece of one of the lesions. Of course we have to do it because the
treatment is completely different depending on which it is. As for
the other spots seen on the PET, none were as significant.
decided which is worse and would only know if I had a
crystal ball telling me the outcome. Infection: we have seen too many
kids succumb to infections that attack the organs - and the tricky
thing is that many fungal infections can not be treated very well.
There are some fungal antibiotics but they are not as successful as
those created to treat bacterial infections. Whether or not it
responds to treatment is anyone's guess. And one of the worst side
effects feared by all of Ryan's doctors with Campath is the risk of
that type of infection. Cancer: for it to invade a vital organ would
be new and scary territory for us. On the one hand, the treatment we
are doing is at least keeping the disease stable, but that's not good
enough if it's in a vital organ. It's also worrisome if it's truly
We are tentatively
scheduled to have the needle biopsy on Tuesday
morning - again under anesthesia.
to looking at Ryan - he looks so good - he is so much
stronger and "healthier" than he has been in months. I am clinging
my faith and belief that he can heal.
I found myself
slipping at home. Ryan had fallen asleep on my lap and
the walls came crashing down. I'm usually a glass is half full kinda
gal but the unknown of what was happening in his body and the
magnitude of what it can be wiped me out. Greg was also pensive and
sad. What tipped the scales is when Greg told me about their walk
tonight. Ryan - almost 5 years old - being pushed in a stroller
passed a small group of kids about his age kicking a soccer ball.
Greg noticed Ryan's looks at the group and interpreted them as Ryan
beginning to realize that he is different than other kids. We have
always known the things that he is missing but we were comforted by
the fact that he was oblivious to it. After Ryan fell asleep, we had
to give him his neopogen shot to stimulate the growth of his white
blood cells - of course after we promised in the morning that he was
not going to get a pokie for the 3rd day in a row. I could never have
anticipated that his white count would have bottomed out. He briefly
awoke when the needle pierced the skin on his thigh and yelled, "Owie,
owie, owie." The evening ended by me crying myself to sleep.
June 3, 2005:
I awoke resolved
that Ryan could be healed. There is no mistaking
that he is strong. Today's theme: Never give up.
count remained at "0." His only therapy today was
transfusions of red blood cells and platelets. He didn't get the
scheduled Campath because of his bone marrow being empty and the white
cells at 0. The focus is to help his marrow recover.
Greg watched an episode of Power Rangers Wild Force - and the
message was Never Give Up. I heard Greg repeating the message - only
I knowing the double meaning. Ryan seemed to take it to heart. By
the way, if any of you have any old power ranger figures, morphers or
megazords that you're looking to dump because your children are older
and no longer into them, we would be happy to take them off your hands
- especially the really old series. We are constantly searching e-bay
but having minimal success. It's a fun treat for Ry - especially on
wicked days like this past week. Please do not give up toys your
children continue to enjoy.
It was a
really crazy busy day at the clinic. Some of Ryan's favorite
buddies, Chassity and Marshall, were there. I love to see them too.
Both are older teenagers - unbelievably fantastic people. Their
spirits are infectious. Late in the afternoon, Ian and his mom came
in for Ian's weekly Velban push. He's the other kid with Ryan's
disease. Really there is no protocol to follow anymore - they are our
only guide. And although a year has passed since he started his
latest plan, the answers then are the ones we are getting today.
Nothing has advanced in the last year. But I was happy to have them
forging a path for us. And his mom's last comment to me: Never give
By the end
of the day, we had additional results. The bone marrow
biopsy was negative. Yea. The spinal tap was negative. Yea. The
skin biopsy was negative. Yea. The test for graft vs. host on the
skin sample was indeterminate. The DNA test was not back yet from
Duke as of 6:00 pm on Friday.
know what next week has in store for us. There is really a
short list at this point.
If it is
an infection, we treat the infection according to the
infectious disease specialists at Duke since they are the top of their
field in the country. That treatment would be determined once an
answer on the liver biopsy is back. And under these circumstances,
the cancer treatment will also be debated. Perhaps continue Campath
on a maintenance schedule - maybe only once or twice a week or maybe
do weekly Velban like Ian does (although Ry had it before and relapsed
while on it and others) or switch to the bigger chemo guns of
Gemcitibine and Venorelbine. We would also explore in addition to any
therapy getting the remaining stem cells. My gut says to do lower
dose therapy Velban. I think the difference from before may be that
since he was on several other chemotherapies and steroids, his counts
were often low and he had to delay or skip doses and maybe that's why
Velban wasn't successful. I think it's critical to keep his new cells
growing. And if the lesions aren't cancer, certainly we should time a
trip to Duke to get the remaining stem cells.
If it turns
out the lesions on the liver are cancer, we will likely
immediately start the Gemcitibine / Venorelbine therapy perhaps in
conjunction with some Campath.
with three experts in anaplastic large cell
non-Hodgkins lymphoma and conferences among the Fairfax doctors and
Dr. Martin, no other considerations are currently out there.
As I look
back over this journal entry, I am taken aback by the
enormous roller coaster ride. It has been one of those weeks.
we conquer. I continue to have faith. Thank you for
helping us keep faith and for keeping us in your thoughts and prayers.
16, 2005 to May 25, 2005
Day 88 to 97 post-transplant
10 days have been fantastic. It's hard to believe 10 days
has slipped by since the last update. Each day I have been happy -
why not? Or as Ryan would say, "So what."
we saw a big improvement with the two biggest and most
stubborn tumors. Slowly but surely they are shrinking and flattening.
Since beginning Campath, we've felt a walnut size tumor disintegrate
beneath his skin to the size of a dime sized thin hard wafer. I am
hoping and praying that his new cells are doing more of the work than
Campath. If his new cells are strong enough to do that, we could be
watching a miracle in progress. In any event, we are delighted for
any progress. We have continued the course of treatment with Campath
3 days a week. He has also needed regular transfusions and
At the end
of last week, Ryan began developing a skin rash. Those of
you following his journey may be sucking in your breath and cursing.
The rash does not look like the cancer rash. It is slightly raised
and rough amoeba shaped spots. The cancer rash was red and looked
like chicken pox that were not filled with fluid. That doesn't mean
that his old nasty rash couldn't change its form, but I am not jumping
to that conclusion. It is a concern of Dr. Horn and Greg so we will
cut one off next week to biopsy it and get a firm diagnosis. It can
also be a form of graft versus host disease (GVHD) although it does
not look like or itch like the rash usually associated with GVHD.
Since the rash started well into giving Campath, it would be resistent
to that drug if it were cancer - on the other hand, if it clears with
steroid creams, it is more likely GVHD or some other kind of benign
rash. We began using a topical steroid cream on Saturday which
typically clears benign skin rashes fairly quickly. This rash was
more stubborn and seemed to only grow over the weekend - covering a
large part of his groin and lower trunk, his armpits, his back and a
little on his head, neck, arms and legs. But by Tuesday I began to
see some of the original lesions peeling, flattening and fading - and
by today (Wednesday), it is obvious that many of the lesions are on
their way out. What a beautiful sight.
Also at the end of the week Ry began experiencing very frequent and
painful urination (every 10 minutes all day) with small bloody mucous
clots and some stomach pains. He essentially quit eating and
drinking. We were excited if he ate a ½ banana and a few tablespoons
of rice in a day. On Monday (the 23rd), he ate a teeny bit more -
stealing the broth of his dad's traditional Korean birthday seaweed
soup on Greg's 38th birthday. By the end of today, he was interested
in food and ate a bit more - filling up his tiny stomach. Also
associated with GVHD is bladder and stomach irritation. We've added
medicines to help combat these issues and over the last 5 days he has
At this point
in Ryan's life, no human will be able to forecast his
path. His disease can no longer be predicted. We have pulled out all
the big medical guns to cure him and they have not done the job. I
look at him and truly - in my heart of hearts - believe he will pull
through. Many of you probably wonder what the bottom line is. No one
can answer that. Some doctors would say what we are doing will buy
him a few months. We have been told that and try to absorb it. At
first I told myself that I need to accept that and make every day
count. Now I feel deep within my bones that he can do much, much
better than that - while still feeling that we need to make every day
count. It's one of life's greatest lessons that I can take from this
much better. His cheeks are deflating and his adorable
smile is not hidden beneath the puffy face. While he struggles to get
up stairs, his strength improves each day. He is now able - although
awkwardly - to bend down and pick things up off the ground. I catch
him practicing running and watch him will his legs to lift up off the
long, long days at the clinic on nearly every weekday. We
are one of the first to arrive and often we close the place down. On
one such day we ran into Ian and his mom. Ian is the only other boy
treated by this office with large cell non-Hodgkins lymphoma. You
might recall that not one kid had been transplanted at Duke with
Ryan's disease so it is quite amazing that there is actually one other
child at this office with the same disease. When we first heard of
Ian, I thought his story was depressing. I believe I even wrote about
it in a journal back in the spring of 2004. It was a time that Ryan
was in his initial treatment and doing very well. Dr. Greenberg was
seeing Ryan that day. I recall it like it was yesterday. We were
discussing in general terms how well Ryan was doing. I was looking
for a assurance that he was destined to do well. Dr. Greenberg took
the opportunity to tell us about Ian and that he had relapsed many
times and had several transplants - one of his own cells and one from
his sister followed by boosts from his sister's cells. At the time I
found this very depressing and discouraging. I now find it
I met Ian last week. He was playing Pokemon on his Gameboy
at the office. He was living life like many other 13 year olds with a
few twists. He still has a port (the inside "tubie") and gets
dose chemo every Friday afternoon. He has been battling this cancer
for 7 years. His magic bullet turned out to be Velban - a drug that
Ryan has already had and relapsed on. But I believe that Ryan's magic
bullet is out there to be discovered. The best the medical world can
offer at this time is to try to manage his disease as a chronic
disease. The likely treatment will consist of chemotherapy agents
Gemcitibine and Vinerelbine. The drawback from my perspective is that
these drugs would not allow him to assimilate into normal everyday
life because the drugs are too immuno-suppressive for him to be in a
setting with groups of kids. My ideal is low dose chemotherapy.
on a new treatment plan will be made after next week. Ry is
scheduled for a PET scan on Tuesday and MRI of brain and orbit, CT of
neck, chest, abdomen, and pelvis, skin biopsy, bone marrow biopsy and
spinal tap on Wednesday. The days will be grueling. In addition to
the scan (and the required starvation prior to the scan in order to be
anaesthetized), Ry will get platelets and Campath on Tuesday. On
Wednesday, the scans and procedures could not be scheduled until 1:30
in the afternoon because of scheduling issues with radiology and
anesthesia. It's maddening to me because these kids suffer so much
from the disease - pain and suffering that we have little control over
- and this is one area where we could actually prevent the suffering
and torture of depriving them of food and drink all day. It makes no
sense to me. I've made my opinion known and tried by very best to
tinker with the schedules but it's an issue I couldn't resolve
favorably this time.
I can't even
say I think the scans and biopsies are all worthwhile.
Greg and Dr. Horn disagree with me, but from my perspective: we know
he relapsed as proven by the biopsy at Duke - and his body tells you
he has cancer and where it is before any scan or biopsy can detect it.
Each and every time there has been cancer, it is seen first on his
body or by how he feels, and the scans, biopsies and blood work are
clean. It is only after we know something is horribly wrong that the
scans and procedures confirm it. However, and with sound reasoning,
Greg and Dr. Horn think that a decision can not be made without
gathering all the evidence. The only thing I demanded was a new DNA
test to tell us whether his new or old cells are present and to what
extent. The blood was drawn this week and sent to Duke for that
analysis. I think it is critical because if his new cells are still
there in full force then they could very well be mounting the fight
against the cancer cells. We stopped the heavy immuno-suppression of
the cells as soon as we determined he had relapsed and that could give
them more fighting power. It is not necessarily probable in medical
statistics but it is possible. There is certainly plenty of evidence
that the new cells are in his body wreaking havoc on his skin, bladder
and stomach - why not fighting the bad cells too?
In any event,
after reviewing the scans and getting results of
biopsies and testing of his blood, marrow and spinal fluid, we will
set out on a new course. And where it will take us, nobody knows.
The medical team is still doing its very best to help Ryan and we are
forever grateful. At this point, however, I recognize more than ever
the power and importance of other forces. Religious, spiritual - I'm
not sure how to define it. Maybe I should question my beliefs and
faith at this point, but that has not happened. It has boiled down to
one source for true complete healing. The earthly medical world is
tapped out. Ryan needs a miracle and miracles can happen.
On days off
from the clinic, we relax and enjoy each other. One
morning we trekked into D.C. to the zoo. It was a blast. Ry wouldn't
have been able to enjoy it much on foot so he rode in his stroller.
It also helped us protect him from any crowds. He loved just about
every minute of it. He told the lion that he had missed him. We're
hoping to capitalize on slow mornings over the next few months and
make a few trips. But even when we go to the clinic, we enjoy the
day. We make it a fun environment. Ryan sees other kids like him and
plays with them all - big and small. If he sees someone watching
Pokemon in a room, he pulls up a chair and slides his IV pole into
their room. If there's a kid playing Gameboy, he scoots up real close
and watches them play a game. If Margy has crafts out at the table,
he either joins in or brings his own little figures to play alongside
the others while they're doing an activity. We talk to other families
and walk their journey with them. We help each other and care about
each other. Of course it's exhausting but it's filled with lots of
in the process of organizing a Make-a-Wish trip to go to
Disney World. It's tricky when you're on treatment but not impossible
because there are some folks down there that can do some stuff like
transfusions and some medications. The current treatment would not
qualify - it's too intense and associated with too many side effects -
plus we would spend all day in a clinic and never get out of the
hotel. We will know better if and when we can get there once we have
a new treatment plan. In the meantime, we have enjoyed visits and
adventures with our friends and family here in northern Virginia. Lou
came over one evening last week suited in a Darth Vader costume and
battled Ryan until he was defeated. The Sochas - although
exponentially growing in numbers - always find a way to fit us in to
their busy lives. Ryan and Greg made it to Ryan's doctor's office
annual picnic. Ryan was full of excitement when he came home with a
Lion tattoo and tales of a goofy clown.
And the love
and support never ends. Sometimes I feel guilty about it
- knowing that there are so many good causes and so many needy people
out there. I wonder how I can repay everyone or at least let them
know that each and every contribution - and I refer to financial and
non-financial contributions - has made me capable of fighting harder
for Ryan and making his life happier. Sweet Barb has visited the past
2 weeks at the clinic nearly everyday with lots of food and goodies.
It goes without saying that my sisters and Greg's family lend a
phenomenal amount of support - as well as love and laughter. After we
discovered critters decided to keep our house from being empty while
we were gone, Amy spent her whole day over here to meet the Orkin man
while we were at the clinic. And she helped me make a dent in all the
clutter - not an easy feat. My friend Betsy recruited a lawn care
company, McGee Landscaping, to mow our lawn. And that was after Ray
Brownelle showed up on our doorstep a few times and cut it - and
continues to be ready, willing and able to go into action. Did I
mention the air conditioner problem - it had blown up and our
incredible friends Larry and Karen Miner installed it and collected
money to offset and cover the costs. We were floored to discover that
folks at Fairfax County donated more leave to Greg - totally
unexpected and kind and generous and . . . Then there's my office
(and extended office with the Sheriff's Department) - simply
astounding - there is absolutely no way to thank them - I can't
possibly explain to them the gift of time. The gift of sharing and
experiencing every ounce of my sick child's life. Because of them I
have spent countless precious hours with him - to rock and hold him
when he's hurting or listen to him discuss the strengths and
weaknesses of hundreds of Pokemon or hear and experience his animated
discussions about Yoda and Darth Vader or watch him engage his dad in
a fierce Power Ranger battle. How can that be measured?
No one knows
the master plan except God himself. But I do know that I
will continue to hope and pray for his healing. And I have much hope
again from the bottom of my heart for continuing to care about Ryan.
May 5, 2005 to May 15, 2005
77 to 87 post-transplant
It's exhausting to cram in so much in a single day, but we're
determined to make each day count. We scoop ourselves up in the
morning and work and play hard until we collapse into bed. My house
is one disaster area after the next - I am never wanting or caring to
find the time to organize and straighten up from our dash back home
from Duke - although I do not want to drown in the chaos so there will
be a day (or two) soon that I will have to give it my attention.
and Medical Update:
May 4th, we have continued on the course of treatment of Campath
on Monday, Wednesday and Friday and on off-days for other infusions or
transfusions. He is heavily pre-medicated before Campath to avoid a
repeat of the reaction from the first dose. It is really a day long
process and some days he also receives other types of transfusions or
infusions to keep his body functioning properly. He has needed both
platelets and red blood cells each week. His potassium, magnesium and
phosphorous are all low and thus he has needed additional infusions as
well as prescribed medications to bring the levels back up. For the
most part, he has been feeling well - two episodes of vomiting and
still walking / leg issues - but for being in his shoes, that's pretty
As for his
cancer, it appears to be status quo - there is really no
change. On the one hand, we are thrilled that it has not spread like
wild fire as it has been known to do in the past. On the other, the
cancer is laying in clusters waiting for an opportunity to take over.
It needs to be squashed. The plan is to continue through all of the
coming week with Campath - so long as the cancer does not progress.
At that point, we will consider adding some other type of treatment -
yet to be identified. There are a few ideas of different chemotherapy
agents which will likely be chosen in order of least destructive to
most destructive to his body. We are concerned about losing the graft
of the new cells and are also concerned about opening the door too
wide for infections because his body is so fragile after the recent
transplant. Dr. Horn intends to talk with a few experts around the
country over the next week.
and many cancer patients are dependent on platelet transfusions.
Last week, when he was very low (12 - translated as 12,000) and needed
platelets, the blood bank indicated they had a shortage and that there
had to be special approval for him to get a bag. I thought it would
be a no-brainer but apparently they are so short at times that they
require that the person is actively bleeding before they will give
them. That's crazy. Think of all the people out there - thousands
and thousands just in your immediate circle between work associates,
neighbors, and the community. Each household usually has several good
candidates. The people in need of platelets could bleed to death
without transfusions. How could there be a shortage? There is a
small shelf life for platelets - I believe it's 3 days - so please,
please consider doing your part and donating platelets on a regular
basis. It's free and there is a tremendous amount of pride and
satisfaction in knowing that they are truly needed.
Fun Side of Things:
Let's start with the new dog. We had a dog when Ryan was
first diagnosed with cancer whose name was Onyx. He was a 100 pound
black lab. He was so sweet - and sadly, one day while Ry was in the
hospital, Onyx found a way to run out on the street and was hit by a
car and killed. We told Ry that when we returned from Duke we would
get a dog. He held us to our promise. Thanks to Jenny Gillis, we
have the most loving, sweet, gentle, playful golden retriever who is
thought to be around 6 or 7 years old. Jenny lugged her 3 kids around
with her to every local shelter in search of the perfect dog. She
found him. Ry named him Dopey after the baby dinosaur in Land of the
Lost - for those of you who watched that series in the late 70s, it
has Chaka and the Sleestaks - and it is much cheesier than you would
day was a beautiful day. I am so lucky to be the mom of 2
incredible boys. But it's funny - and I don't think I'm alone - my
desire was to do no mothering on Mother's Day. I relinquished all
duties to Greg and his dad. They waited on us hand and foot and I
quite enjoyed it. Ryan had a tremendous day as well. He worked his
leg muscles harder than he has in months - walking around the lake and
to the little playground. After that, he traveled across the street
to have a little impromptu playdate with Jake - and it made him feel
like a regular kid - that was the best gift he could have given me.
fairy strikes again. The Welcome Home Fairy decorated
our front lawn again - this time with beautiful luminary candles along
our front walkway. Ryan's eyes lit up when we pulled up after a long
fun-filled exhausting day at the Holts for Mother's Day.
the Welcome Home Fairies out-did themselves. They scored two
tickets to the premiere of the new Star Wars movie. It was being
shown at the Uptown theater in D.C. as a function for the Children's
Defense Fund. All the stars aligned and Ryan was able to go with his
dad to the show as a special guest at the function. A limo (courtesy
of the Welcome Home Fairy) arrived at our doorstep only minutes after
we got home from an 8 hour day at the clinic to take Greg and Ry to
and from the show. I knew Ry was excited to go but I wasn't sure he
understood it all - given that he was equally excited about going to
Burger King to get a Star Wars toy in the kids meal and watch a Star
Wars VHS tape in the limo.
But it turned
out to be the most exciting event of his life. He sat
next to Carrie Fisher (yes, Princess Lea) and in front of Queen Nor
and her son, Prince Something. He was announced as one of the special
guests in the audience and Greg lifted him up on his lap to show him
off in his Star Wars t-shirt and filtered mask. He met R2-D2 and was
so excited to report that he touched his eye. He also threw the force
at Darth Varder who was so confused by Ryan's awesome power that he
waved back until Greg explained he was being zapped by the force.
Darth Vader was apparently so impressed with Ryan that he let him hold
his light saber - a dangerous move on his part. After the movie, he
gave Princess Lea a really long 10 second hug and from the sounds of
it, she knew she was lucky. He was also a star on t.v. - his meeting
with R2D2 was captured and played during the news piece about the
movie premiere. And by the way - he loved the movie.
A few days
after the event, we were going through our old VHS tapes to
see which ones we could toss when Ry reminded me that we needed to
keep some because, "Mom, the limo." Like King Ryan was going
carted around in one on a regular basis.
steady presence in his life - Ry has gotten together with his
buddy Ben. Ben and Ry picked up where they left off - kids don't
really skip a beat. We also stopped by the Fontanillas a couple times
for a warm meal after clinic and for Ry to hang out and play with
Diego. I did notice that Ry's friends are curious about Ry's new
look. I love the straight forward innocence of kids. Ben wants to
know why Ryan's cheeks are chubby and Diego enjoyed rubbing Ry's bald
head and asking when his hair would grow back. And we're lucky on two
fronts because none of the comments were mean spirited and Ry is quite
comfortable in his own skin.
mean that I never ache for him for the differences in him
and his life. I do. In fact, sometimes I feel like we are trapped
within 4 invisible walls and we are watching the world go by through
the glass but we can't participate. I wish Ryan was able to run on a
field during a soccer match or be with groups of kids on a T-ball
team. I wish he didn't have tubies so he could get in a public
swimming pool and splash around. I want him desperately to meet other
kids his age and develop his own little relationships in school. For
now, I relish the days he can play with Ben and Diego and a handful of
other small play mates and try to push away the other thoughts lest I
let them consume me.
We had a
scare with Evan this past week - and we are not exactly in
the clear but feeling much better. We are delighted to report that he
has mononucleosis. Crazy that I used the word "delighted", huh?
alternative was lymphoma. He has been carrying several enlarged lymph
nodes on his body for some time. Recently, many more popped up. A
doctor's exam revealed an enlarged spleen. All signs of a systemic
problem - either infection or cancer. Blood tests determined that he
has mono. Hallelujah. So the biggest problem is that we need to try
to keep the boys separate - and luckily for us, we have the second
parents (or maybe they are first for now and we're second) in Greg's
parents so our task is easily accomplished.
my sister Lisa, her husband Kenny and the Harju family in
your thoughts and prayers this week. Mrs. Harju passed away after a
short but fierce battle with cancer. I am thankful that she is at
peace now and no longer in any pain.
to enjoy and appreciate all the well wishes, sweet cards,
and generous gifts from all of you. We need you to keep us at our
strongest when Ry needs us the most.
April 29, 2005 to May 4, 2005
We're home - a bitter sweet return.
biopsy of the tumor in his right flank was malignant. Tests show
that his cancer now has a protein called CD 52 on the surface of all
the cells in the tumor. A specific monoclonal antibody called Campath
has been identified to go in and specifically attack this protein.
This type of treatment can be effective to help reduce or eliminate
tumor growth but is generally not associated with a cure. It is a
short term fix.
first - we hope and pray that it will stop the
progression and then start eating away at the tumors. We have
discovered about 5 more tumors that are palpable from the outside and
of course we do not know how many are undetectable further inside his
body. He got his first dose of Campath on Sunday and has since had 2
more doses. During the first dose, he had a poor reaction - rigor
(chills), low oxygen levels (hard to breath), high heart rate (near
200 when normal for him is around 120), high fevers of 103 + that
failed to go down with Tylenol - all of which landed us back on 5200
at Duke Hospital over Sunday night. He got his second dose in the
hospital at Duke on Monday and handled it much better. Campath is
known to cause severe reactions on the first dose.
We had a
day off on Tuesday and packed up all our belongings and
traveled home. Today (Wednesday) we returned to Ryan's old office and
settled in for the day long treatment.
As soon as
the surgery on Thursday was done, our thoughts turned to
getting home. We had our meeting with Dr. Martin on Friday. Once we
determined that there could be nothing more done at Duke - at least
nothing that could not be done in Virginia - we announced our
intentions. Dr. Martin was completely receptive and was willing to do
whatever it took to accommodate our wishes. A pow wow was convened
with all the doctors at Duke and Ry's doctors in Virginia and
consultations were made from some other outside experts. Campath was
the first choice. It is appealing because since Ryan is so close to
transplant, his system is the most fragile there can be and monoclonal
antibodies do not take quite the same toll on the cell counts. He is
at an enormously high risk for infection but otherwise the treatment
is not as harsh as general chemotherapy.
were chemotherapy agents Gemcitabine and Venerelbine.
As mentioned, the risk outweighs the benefits at this point.
Radiation directed at specific spots was considered but determined not
to be a good choice since the cancer will grow faster than it can be
zapped. A total body radiation treatment is not possible because he
had his maximum lifetime dose of that type of radiation prior to his
transplant. Radiation might be used to eliminate symptomatic tumors,
that is, if a tumor is painful, it can be irradiated instead of cut
out to eliminate the pain. If the Campath works, we will likely do 3
treatments a week for maybe a month. At some point during or after
Campath - so long as the tumors appear to have been flattened - we may
return to Duke to get the leftover stem cells.
Now let me
tell you about the Ry-guy and our spirits.
his status has improved - after all, he got to come home.
Overall, he is feeling as well or better than he has over the last
month. His spirits are high and he is having a blast. We want him to
be as happy as any 4 year old. Most importantly, Ryan will see
himself as we see him. I want to see him - and want everyone else to
see him - as a loving, breathing, happy child.
with Chris' visit - Ryan actually kicked us out of the house
before our meeting with Dr. Martin - it was one of the first times we
were early at the clinic. When we got home Chris and Ryan were in the
parking lot where Ryan proudly showed us how Chris let go of the
stroller and let Ryan "drive" it down the hill. I, of course,
little more interested in Chris' speed to keep up with the stroller -
but it didn't escape me that Ryan, feeling extra powerful, giggled
against the wind.
morning Karen, Jim, Riley and Caroline came by on their way
back from vacation. Their visit was glorious. First, we all went on
a walk and enjoyed the weather. At one point, all 3 kids had on one
of Ryan's power ranger costumes. They were all charging around and
powering up to become fierce rangers. Ryan and Caroline had some
special moments - some that probably made Jim a little nervous. Mary
Sinnott and Nancy Beretz made a "surprise" visit that they had
for some time. The timing was perfect - at a time that we needed
reinforcements. My dear friend Lisa came to my rescue again and
traveled down as well. Ryan played with all 3 of these adult
playmates as well - and loved his new little harem.
our best friend Michael. The Michael of Laura, Ben and
Michael. The ones who do the work on this website and so, so much
more despite having added 3 more children in the mix and a home
business. I wanted to cling to him when he arrived and never let him
go. He is like a second dad to Ryan. He is a good friend and
sounding board for Greg - important shoes that not many can fill.
Even though much of the day was consumed with Ryan throwing up and
feeling really rotten from his reaction to the first dose, he had many
special moments with Ryan both Sunday night and Monday day. Ryan sat
on Michael's lap at the hospital and surfed the net. There were so
many tender moments that the two shared.
nurse) and Tori (Ryan's best buddy) came to the
apartment to spend some time with us before we left. We will truly
miss them - as well as all the other friends we made in Durham. It is
full of some really fantastic people. It was a team effort by all and
I do not feel it was wasted time.
drove all the way down to Durham to load up his big old
SUV and drive a truck load of our stuff back up here. He is yet
another hero on our long list. And Amy, Dave and Daniel met us at the
apartment on Monday night to help organize and pack the rest of our
things. How we accumulated so much stuff is a mystery but it was a
lot of work and I really don't think we could have done it without
Amy, Dave and Daniel. Ryan was thoroughly entertained by Daniel while
we packed. I was struck at how mature Daniel had become in his short
11 years. I caught him gently helping Ryan to get up on the curb -
without causing Ryan to feel bad about his inability to do it himself.
And of course Daniel taught Ryan how to suck on sunflower seeds and
spit them out. A skill apparently all boys need to master.
charge of the whole packing thing when we needed someone at
the helm. Although it was a long exhausting day, we got it all done
thanks to Amy and Dave. When we got home, we had a sweet reunion with
Evan, Papa and Hominy. Ryan fell right into the role of big brother.
He fed Evan and had him sit on his lap and lay his head on his chest.
Ryan played with Evan's hair and pet him - telling Evan that he was
cute and a good boy.
We woke Wednesday
to head into the office. Overall, it was really
nice to see our old friends and get lots of big hugs. Greg and I
wondered out loud if it would be emotional to be there. I was
determined to steer conversations in a positive direction and not
dwell on the return of the cancer. I think we accomplished it. We
are truly happy to be home.
In the evening,
we celebrated with a household of family and friends -
Lisa, Kenny, Brady, Alexis, Krista, Art, Nick, Austin, Hominy, Papa,
Evan, Janelle, Lisa Barnett and Matthew. The house was chaotic - just
the way I like it. Ryan and Brady played a Star Wars game on the
X-box. Evan and Matthew chased balls. Alexis and Janelle danced in
the kitchen. Papa and Ryan ate rice and medici. Homy and Lisa were
in deep conversation on the couch. Ryan sat on the couch next to Art
with his Arm resting on Art's arm. Lisa B. supplied good eats. Greg
and I were soaking it all in. Krista and Lisa stole moments with
Ryan. The whole gang had a light saber battle outside with Nick in
charge. Ryan stomped all over the front yard with light saber in hand
- his legs got the biggest work out since well before his transplant.
His legs are getting stronger then they have been in months. Hanging
out with cousins is good medicine.
for the night after discovering that the Welcome Home Fairy
stopped by and decorated our front lawn with streamers and balloons.
We still have have not discovered the true identity of the Welcome
Home Fairy (although have our suspicions) who was able to go
undetected despite a full house - but it was a wonderful thing for
times Greg and I feel like crumbling. And we have had a
couple good cries. But - honest to God - we intend to appreciate and
enjoy every last second. I have told myself countless times that I
must live in the here and now - I will have time to live in the future
when it comes but for now, I can not let this time pass me by. Each
laugh is treasured. We still have hope but need to balance it with
the knowledge that modern medicine has been nearly exhausted in Ryan's
We have received
many heartfelt messages over the last week from many
of you praying for us and thinking about us. We cherish each and
to Ryan's Initial Diagnosis
Treatment in 2003
& Donations LINK
Listen to "Ryan's Song"