are listed NEWER to OLDER, meaning newer entries are on top,
older at the bottom. Depending on when you read the site last, you may
want to scroll down, find the entry you read last and read UP for a more
chronologically accurate update.
Update December 28, 29, 30, 2004
Trip to Duke delayed. We will not be going to Duke as expected
this Saturday. There are many variables on either end of the equation
- cancer and its treatment is very unpredictable. Sometimes the facility
is not ready for you. Sometimes the patient is not yet ready for the treatment.
In our case, the main culprit is Ryan's rash.
Battle-Ready. We are nonetheless battle-ready. When I learned of the delay,
I was frustrated, scared and saddened. And then I went to sleep, woke
up, and saw my sweet bright witty lovable child. He is so alive. This
disease will not win. I am renewing my commitment to live in the moment,
fight like hell and let life take its course. By endurance, we will conquer.
Tuesday December 28, 2004:
Rainforest Cafe - vacation. We have not all dined in a restaurant together
in over a year. Ryan had gone about a year and a half ago to the Rainforest
Cafe with Uncle Chris, Aunt Angie and Hominy. Of all things, on Monday
he began talking about that adventure of many moons ago. We knew then
that we had to get there. At the time, we weren't sure if we needed to
go into the office for chemotherapy. I left a message with them to try
to find us by mobile phone and off we went.
Ryan explored every nook and cranny of the place 5 times over. Each elephant's
screams made him pause in awe and appreciation, every gorilla howl made
him feircely thump his chest and the leopard's growl made him growl right
back in defiance.
Utterly exhausted from the fun, Ry shut down in the car on the way home
and ended up waking 4 hours later on the couch at home. For us, it was
Wednesday December 29, 2004:
This was the day I spent quite a bit of time on the phone with the nurses
and doctors both here and at Duke - learning of the delay and discussing
the new battle plan. I was digesting the information that the timing for
the Duke trip just wasn't right. Dr. Martin told me that to forge ahead
with transplant would result in a zero chance of success - he said if
you can visibly see the disease, it is too much for the radiation and
chemo that will be given to him to defeat it. It set me back a few paces.
It was one tiny dot on his shoulder.
I was feeling pretty low about the situation. Things felt like they were
spinning out of control. Thankfully, Greg took the lead. He stayed positive
and strong and let me lean on him for support.
New Game Plan. High dose Ara-C and PEG-Asparaginase for 3 days at the
hospital beginning the 30th. And while we're at it, do prep work for the
transplant starting with surgery before the chemo in order to place the
new central line so he will have a total of three lumens (or access points).
He may also get another spinal tap with triple intrathecal on a date right
before he leaves for Duke. The dosage of the Ara-C will be increased and
the asparaginase will be in the PEG form which is longer lasting in the
body. We will take these cells down.
The goal is to keep the bad lymphoma cells out with the critical time
being from when his counts recover to the first treatment at Duke. There
will still need to be one week of work-up at Duke prior to the start of
We will do it until we get it right.
Ry-Guy: Ryan got a hermit crab today. And Uncle Chris arrived to play.
More happiness for one boy than he can barely stand. As soon as he got
the crab, he stared into the cage to watch him peek out of his shell.
Finally, the crab began to move when Ryan's dad took a closer look. The
crab immediately retreated. Greg left the room thereafter and was replaced
by Chris. It was then that Ryan looked directly at Chris and said, "Chris,
do you have a big head?" And Chris, looking puzzed, responded, "No."
Ryan sighed a bit of relief and said, "Good, because Big Headed Dad
scared the crab."
Thursday December 30, 2004:
Ryan was NPO (could have nothing by mouth) in the morning and up until
his surgery. The day started with a check of his counts at the doctor's
office. He needed platelets prior to the procedure. Once that was done,
we headed to the hospital. By around 2:00 pm, he was being prepped for
Surgery was successful. While he was quite sore at the new site, he weathered
the surgery well. He was funny and energetic once he got to his room.
He created power ranger type guys and canons out of legos with Aunt Janelle,
ate five (yes, 5) bags of Cheetos and wheeled up and down the halls in
his drag racing car. Now, he knows how to live.
He will be in the hospital until (probably) Sunday to finish this treatment.
From there, we try like crazy to ward off infections. If there is any
hint of a fever, cold, or infection, we will get aggressive treatment
at the hospital. And then - Duke.
I draw off many sources to find my strength. I have released my fear.
I don't exactly know how but I do not feel that burden currently. I dug
down and found something. It doesn't hurt that I have such great family
and friend support. And I am blessed to have a friend, Cynthia, who is
a skilled and insightful writer. She has the ability to tap into the depths
of my soul and see when I need to be rescued. She is able to walk me step
by step through the thorns. If only everyone could have such guardian
I am floored when people tell me that I am an inspiration to them. I am
and have always been a strong woman. But an inspiration - I don't think
so - the credit belongs to the pillars that have and are supporting me.
HAPPY NEW YEAR - and here's to beating cancer in 2005!
Update December 22 to 27, 2004:
December 22, 2004:
5:00 am: Fever. The lowest number to still qualify as a fever
at 100.5, we nevertheless had to make our way into the hospital for hefty
anti-biotics as a precautionery measure. As previously mentioned, high
dose Ara-C can provide a welcoming environment for some serious bacterial
infections to grow so there is no taking any chances. Ryan was still neutropenic
- but a few white blood cells began to appear with an ANC at 100.
Ry felt really good so he was anxious to get out of the room and play.
The bad news is that he was not permitted to because of having a recent
fever. The Oncology floor rules are set up to prevent the spread of infection
- and kids showing any remote signs of infection need to stay away from
the rest of the kids.
Ryan did have a special visit from Rudolph. He posed for a picture sitting
on Rudolph's lap and giggled when Rudolph's big red nose tickled his head.
December 23, 2004:
Still at the hospital but thankfully no bacteria had yet grown. It is
still a little early to tell, but so far so good. The deal was if the
fevers stayed away all day, we could leave that evening. Ryan's white
blood cells began to slowly climb with an ANC in the 300s. Still neutropenic
but improving. Neupogen shots were still to be administered.
Ryan was bouncing off the walls. He and Greg were literally running up
and down the halls. Ryan was feeling good and was charming all the nurses
- and a few of the other patients as well. He challenged Ashley the tech
to some Pokemon battles - I think he has a little crush on her. She jumped
in the battle like a true Pokemon trainer.
We were discharged with instructions to return on the 25th to check to
see if he needed any transfusions. Getting home in the early evening,
we were met by Amy and Daniel who were there to deliver happy chubby Evan.
We all played for a few minutes with Ryan chasing Daniel - and Daniel
politely (and dramatically) falling on the ground whenever Ryan attacked
with his pretend weapons. Ryan seemed so pleased with his great power
Michael and Ben made a surprise visit for a quick playdate. A stranger
would not have known that Ryan was at all sick other than the telltale
bald head. Ben and Ryan made the power ranger transformation with masks,
weapons and communicators. Funny how they always want the same mask, weapon
and communicator - boys will be boys.
Karen also graced us with her presence. She's got a knack at picking up
on my moods and squelching any self destructive feelings. And she even
threw in a little foot massage to top it all off.
Last, but certainly not least, Chris and Angie came down from Pennsylvania!
I think Ryan's heart was about to explode - how could he be this lucky
all in one day? At this point, we all stumbled into bed and realized we
had a really good day.
December 24, 2004:
One of the reasons we were anxious to get out of the hospital yesterday
is because of the special visit from Chris and Angie. Although squeezing
it in between work days, they found a way to come down to celebrate Christmas
with Ryan. They set aside the entire to day to hang out with Ryan. And
as many of you know, they are some of his absolute favorite people. At
one point he asked Chris if he could stay forever.
I could see about half way through the day Chris didn't think he was going
to keep up with Ryan. It's amazing that a 4 year old with cancer - one
with low red blood cells and platelets - can run circles around you -
but it actually does happen. Chris can certainly attest to this. I can't
begin to capture the fun that Ryan had with Chris and Angie. They read
a comic book, played Pokemon, and ate together - but most importantly,
Ryan enjoyed being right next to Chris - sitting as close as humanly possible
without sharing the same clothes. We even caught him calling him something
between Chris and Daddy: "Craddy".
A surprise visit from Lou just at the point Chris and Angie were leaving
took the sting out of Chris' departure. Lou brought over a computer game
that was designed by a kid with cancer. Ryan spent the next hour shooting
bad cells and trying to defeat the rash, vomit, and chicken pox monsters.
Ryan has continued over the last few days to have "bottom issues"
- as he calls it. And although they consume the moments when he is uncomfortable,
when I reflect over the day I hardly remember the "bottom" instances.
Other exciting news for the day: my sister Krista had her baby at 12:45
this morning. Austin James weighed in at 6 lb, 4 oz. In fact, she was
in the hospital before we checked out yesterday. Both she and the baby
are happy and healthy despite about 20 hours of labor, pushing for 1 1/2
hours and ultimately being rushed to an emergency C-section.
December 25, 2004:
Merry 2nd Christmas. Ryan and I made our way into the hospital at 9 am.
It was Greg's turn - beginning last night - to have bottom issues - he
was sick as a dog. And actually his biggest complaint was that he was
shaking uncontrollably and could not get warm regardless of how many comforters
and blankets he was under. I immediately quarantined him. He was not allowed
to come near Ryan and had to wear a mask whenever he was out of the bedroom.
As a result, Ry and I made the trip solo on Christmas day. It was an overall
pleasant day. Ryan did need platelets so we were assigned a room and made
ourselves comfortable. Things at the hospital move at a snails pace and
thus the tranfusion was not completed until 6:30. We had to stay an extra
hour to make sure he did not have any reaction to the platelets. It was
a long day but we left the floor at 7:30, made a quick visit to see Krista
and Austin and then arrived at 8:30 pm at the Holts for Christmas dinner.
And a perfect lead in to reflect on how fortunate we are to have Greg's
parents. It's true we have a lot of support - but none as strong, steady
and dedicated as Homi and Papa. I guess that's what it's all about to
be parents. Evan really has two sets of devoted parents. They are silently
and constantly giving of themselves.
December 26, 2004:
A full yet pleasant day. Greg is still under the weather but improving.
Still masked in the house but allowed to play with Ryan - at least at
arm's length. They played some video games. Ry had lots of energy throughout
the day. His favorite activity was "making ingredients" - Ryan's
version of cooking. He ususally picks out the ingredients which leads
to some really interesting kitchen experiments. I was able to surround
him with a few compatible ingredients today which led to a semi-edible
peach surprise. The uncooked flour was probably where I went wrong in
the provisions - but Greg and I still took a few good swallows. Ryan powered
down a little earlier this evening at about 7:30 pm.
We head into the office tomorrow for a spinal tap and infusion of chemo
in the spinal fluid. I am starting to feel totally overwhelmed at the
thought of heading to Duke in 6 days - and a little frightened as well.
I'm not sure I'll have much time this week to ponder it all - it's probably
just as well. For now, one day at a time. I'm a little worried over what
a bump that appeared on Ry's shoulder. We'll have to keep a close eye
on it to see if it is the cancer rash.
December 27, 2004:
A full day at the clinic. Ryan underwent a spinal tap and an injection
of chemotherapy (Ara-C, methetrexate & hydrocortisone). A spinal means
going under sedation which usually means Ryan is upset that he can't eat
or drink. Luckily, Michael was there to distract any thoughts of food
for Ryan. Michael was watching a movie but that didn't stop Ryan from
nearly sitting on his lap and calling out at the top of his lungs the
names of the Pokemon that appeared on his game boy.
In the spinal tap procedure they take spinal fluid to test it. The great
news: it is clear - no cancer cells in the central nervous system. A bone
marrow aspiration was also done while he was under sedation at the request
of Duke. Those results take several days to check for cancer in the bone
The rash appears to be recurring. I am screaming within. He shows no other
signs of disease in other body parts. Such stubborn bad cancer cells.
Not a good thing but not one that we'll let consume us. We need to get
to Duke and get new clean cells for him. Does this mean he is not in remission
or that he has had another relapse? Technically - and assuming it is the
rash we are all too familiar with - I suppose so.
Other than waking up very grumpy under the influence of the sedatives,
he was active and playful - "wild" might even describe him.
Although wobbly from the drugs, he refuses to stay put. Up and down the
stairs - up and down the stairs - I was tempted to put the gates up for
I occasionally remember that this is the holiday season for all those
regular people out there. I hope you all are able to spend time at home
with each other over the holidays.
Update December 17, 18, 19, 20, & 21, 2004
"by endurance, we conquer"
We have adopted this motto to help us in the upcoming transplant.
I am itching to go yet frightened nearly out of my skin. If this is the
way to save Ryan's life, then let's get there. And, please God, let us
all return. We must and will weather it and prevail: Fortitudine
It's all rather heavy, I know. The gravity of the allogeneic transplant
is becoming more clear to me as we get closer to packing up for the remainder
of the winter and into the spring.
In the meantime, we continue to enjoy Ryan's "good" health and
happiness. We are also truly blessed to have such a tremendous team assembled
to get us through this chapter of Ryan's life. And that includes all of
Stem Cell Drives:
Janeen, Scott and Martha's drive in Richmond and Chris' drive in California
were a tremendous success. They added nearly 200 donors for the registry.
That's 200 more people that are now identified and willing to give a piece
of themselves to save another's life. How incredible.
We hope to have more in the near future. And we will continue to add to
the bank over the years. I have recently learned from a mother of a child
being treated at Ryan's doctor's office that her mother-in-law died waiting
for a match for a bone marrow stem cell transplant. She apparently managed
her cancer for years waiting for that match. It's so sad because no doubt
there are many matches out there for her but none part of the registry.
Friday, December 17, 2004
Ryan's ANC (white blood cells) were still 0, as expected. Ry got a red
blood cell transfusion that shot his hemoglobin way up. He had a blast
in the office with Michael, a fantastic kid of 12 who is kind, gentle,
and wise beyond his years. Michael knew Ryan's love of power rangers and
brought in a slew of his that he no longer played with - and gave them
to Ryan. So sweet and kind. They battled with rangers, watched movies
and ate slim jims all day.
Meeting with Dr. Perdahl. We dropped off Ry at home where we were met
by Papa and headed back to the office for our meeting. It was very informative
and provided some of the finer details of the roadmap for Ryan's treatment.
We still expect Ryan to start at Duke on the 3rd of January. We will likely
set up camp on the 1st and 2nd at a rented apartment.
The week of the 3rd will be "work-up" to include things like
making a fitted mask for radiation treatment and some scans. We may be
able to get some of the things (like surgery for a new line, dental appointment,
etc) out of the way in the next week up here if Ryan's counts recover
The 8th will begin radiation. The plan is to administer cranial radiation
in the first week. Then, total body radiation - probably the 2nd week
if not at the end of the 1st. The dosage he will receive will be equivalent
to those in the Chernobyl disaster.
Have you caught your breath yet? Yes, it's a little overwhelming but this
is how to eradicate the ugly evil cancer cells that have to date eluded
conventional chemotherapy treatment.
Overlapping with the radiation will be a chemotherapy called Melphalon.
This is a drug that can be cardio toxic, meaning dangerous to the heart.
At the end of this bombardment, Day "0" begins. Day "0"
is the day that the donated celled are transplanted. The calendar begins
that day. The goal then is to have the cells engraft - usually the beginnings
of engraftment are seen after 2 or 3 weeks. Day 100 is the ultimate goal.
The side effects throughout the 100 days are many and varied - most often
seen are burned, peeling and itching skin, mouth, throat and stomach sores,
low white blood cells, red blood cells and platelets necessitating transfusions
of all. Many of these "short term" effects will be horrendous
for sweet Ry but all are acceptable for the expected trade-off. We must
brace ourselves that during this time he may not like us and feel quite
depressed and angry.
The long term effects are as well ones I am willing to live with but scary
nonetheless. Learning disabilities, cataracts, secondary cancers, infertility,
stunted growth - all top the list.
The things you never knew - nor wanted to know - about treating the sick
Saturday, December 18, 2004
Ryan was bouncing off the walls from the red blood cell transfusion. So
much so that I threatened that we might have to go in to return some of
them. He was literally crawling all over me and had boundless energy.
He had a great visit from Uncle Kenny in the evening that finally tuckered
Sunday, December 19, 2004
All Ryan wanted to know is who was going to come visit him. Although not
an entirely flattering commentary on mom and dad, it means that he is
feeling very well and pumped up for fun. I truly can't get enough of this.
Ryan was psyched to see Krista in the morning. Then Ben made a quick stop
by to exchange Christmas gifts.
I eventually made my way to Stafford for the concert benefit put on by
a few local bands. Kim Gumabay made the trek in the winter blizzard with
me. Okay, so not a blizzard but certainly a lot harsher than we expected.
I don't think we were ever going above 20 on the way there. The event
was really fun even if the weather kept a lot of people at home. I met
some more incredible people who sincerely care about my Ryan. It overwhelms
Monday, December 19, 2004
We went to the office to check counts and platelets. ANC still 0 (not
surprisingly) and platelets at 15 (pretty low). Ryan still had lots of
energy from that incredible red blood cell transfusion from one of the
directed donors on his list. Interestingly, there were no platelets in
the blood bank that were CMV negative (a specific criteria for Ryan and
many others). As a result, platelets needed to be shipped in from somewhere
else which took about 2 hours. Platelets can not be directly donated because
they are only good for a few days and it is too unpredictable to know
when a patient might need them - and NO ONE - especially us - want them
going to waste. This is just a friendly reminder that not only do real
people need your blood to keep them alive, but your platelets as well.
It is just like donating blood but takes just a little bit longer - still
a small price to pay to keep someone alive who can not produce them on
Back to the appointment: We plan to do another spinal tap and triple intrathecal
chemotherapy infusion next Monday. The concern is that Ryan has not remained
cancer-free without coverage by treatment. The first two relapses occurred
when there was delay in treatment.
Ryan fell asleep a little sad that no visitors could come over. I desperately
want him to enjoy these weeks while he is feeling good but I also know
that we can not risk a set back from an infection. That limits our playmates
tremendously - especially this time of year with the cold and flu season.
Somehow Greg and I were acceptable substitutes and Ry seemed to have a
good time with us. I think I even got some of the powers of the Pokemon
correct: I choose you, Torchic, "Fire attack!" Those of you
Pokemon fans, Do I pass?
Tuesday, December 21, 2004
fabulous day. And no doctor's appointment. Each appointment in the last
couple weeks has started in the morning and ended in the late afternoon
/ early evening. It's the nature of treating a child with cancer - certainly
at a busy practice like the one where he is treated. So not to be there
is a treat - although we make the most of our time there.
Ryan made every minute count today. We went to Amy's house where Ryan
played with his brother Evan and the two left their mark at Amy's house.
A small tornado might not have done as much damage. Ryan enjoyed stroking
his brother's face as he fell asleep, searching Daniel's old toy baskets
for left over Pokemon figures (and finding a few that are in the clutches
of his hands as he sleeps for the night), and wrestling with Daniel. He
was utterly exhausted by the time we left. We barely strapped him into
the car seat when he nodded off for the night.
I hesitate to report the only damper on the day which was his "bottom
issues." He continues to fear pooping because of the fissures in
his bottom which are having a hard time healing without a functioning
immune system and platelets. I feel so sorry for him when he is chasing
Daniel one second and the next screaming "BOTTOM!" You can see
the frustration and anxiety on his face. And it is clearly very uncomfortable.
All very minor compared to the whole scheme and still this day would be
considered a perfect day for Ry.
We head back to the office tomorrow to check counts and see if he needs
any transfusions. I am getting slightly anxious about preparing to head
down to Duke. Thanks to all that have volunteered to help in ways I had
not even thought of - I will be reaching out to all this week and next.
And I haven't forgotten that your Christmas is upon us. My wish for you
all is that you have some awareness of how lucky you are to be with your
family on this day. Enjoy each other.
December 14,15 & 16, 2004:
December 14, 2004:
Christmas Eve. We got home from the hospital in the afternoon.
That means Ryan had no more fevers and his counts were overall hanging
in there. His ANC was in the 4000s and his hemoglobin was decent at 10.1
and platelets were getting low but still okay at 40.
Well, it was the coldest day of the year thus far. To make things a little
bit more challenging, we came home to no heat. The furnace decided that
it had had enough after 37 years of heating up this house. Kaput. It was
out. Luckily for us, Greg had bought a Y2K kerosene heater. We stayed
tucked away downstairs with the heater for most of the afternoon. Only
escaping upstairs to
Now here's where things get incredible. Our friend Larry Miner just happens
to be certified in HVAC. Miraculously, we tracked him down and without
hesitation, he kept right over. He determined the old furnace was dead,
he ordered a new one, conviced the store to stay open so he could drive
over and get it, and then he and his friend Walter stayed until 1:30 am
installing it. What could we possibly have done for such kindness? It
boggles the mind.
Meanwhile, Santa's helpers arrived. Mary Conlon Sinnott pulled into the
driveway directly behind us when we got home from the hospital - with
hot food in hand (note: credit to Rachel for the absolutely scrumptious
food). Although Mary is a little more girlie - she was able to jump into
the world of Pokemon and battle like a true Pokemon trainer. Jim Peterson
brought over a 4 1/2 foot dancing Santa and then played a fierce lightsaber
battle with Ryan. I think they went up and down the stairs 12 times. Lisa
next came over to bring Ry his Christmas present. She found the coveted
white ranger feather sword and again the battle was on. They chased and
giggled for an hour. Then came Janelle, my little wrapper - although Lisa
didn't escape without putting some paper on a few gifts. Ryan was warned
that he needed to hit the sack or Santa wouldn't be able to stop by. He
forced himself to go upstairs after we all danced to a few of the Black
Eyed Peas songs. Ryan's moves were by the far the smoothest.
December 15, 2004:
Christmas Day. Let me cut to the chase: I am utterly exhausted from all
the fun we had today.
But before getting into the festivities, I have a medical information
note. Yesterday I got a little information in a short conversation with
Dr. Perdahl. To go over the details, a meeting was set up for Friday afternoon.
I did confirm that the transplant experts think using his own stem cells
would be an exercise in futility. Alrighty, then - it's off to Duke we
go for the full blown allogeneic. I spoke with the nurse coordinator at
Duke this morning. I learned that the target date to begin the transplant
process is January 3, 2005 - Evan's first birthday.
There is a cord blood match of 5 of 6 with 7 units. The 7 units parts
represents the volume of stem cells in the cord blood - 7 is a very high
number - they would want at least 2 - successful transplants often have
the highest volumes. That's a good start.
Now Ry has to make it to transplant without another relapse. I am now
anxious to get underway. We need to make it to transplant. It's his best
hope. Please focus your good thoughts and prayers on this interim time.
Any relapse greatly jeopardizes his chances of beating the cancer. Get
us to transplant without a relapse and in relatively good health.
Back to the Christmas festivities:
I could not have dreamed a more perfect day for Ryan. After waking, we
checked to see if Santa had come. Sure enough, presents were under the
tree and a stocking for Ryan was hanging off the chimney with a green
Zeo power ranger peeking out of the top. You could see the excitement
building in Ry. The plate with the cookie left the telltale signs that
Santa had in fact been there. Ryan was especially impressed with the fact
that Santa finished off his milk. We opened and played and opened and
The day was already a success. Ryan was walking on his own; he was alert;
he was smiling; we were together at home in front of the Christmas tree.
First came Amy, Dave and Daniel for a morning visit. Ryan's playfulness
was contagious. Everyone was assigned a light saber or some other battle
weapon. Ryan insisted that all the boys bundle up, go outside and become
power rangers to fight evil.
The day had somehow gotten even better.
Next it was Evan's turn to open his gifts. Evan's turn in the spotlight.
Such a lovable creature. Happy to be breathing.
Just when things were settling down again, in came Krista, Nick, Chad,
Lisa and Alexis followed by Kenny, Brady, Oma, Papa, Janelle and Art.
And the wonderful stupendous chaos broke out. It's the chaos associated
with the fun and laughter shared by big families. Not to mention my family
has a membership in the loud family club. I love when there are so many
conversations going on that you can't possibly keep up with all of them.
I reveled in the kids exploring, running, hiding, playing, giggling in
every nook and cranny in the house.
In the midst of all of this, Santa knocked on the door. The young ones
were in awe of his sight - some excited and some a little scared. Ryan
sat up on Santa's lap with a dreamy look. And Santa had the one thing
Ryan had requested - a Pokedex. Yes, the electronic handheld gadget that
indexes all the Pokemon with a picture, statistics and powers. A magical
Michelle delivered Santa and some delicious stuffing to our doorstep.
It was time to eat - no party can be had without a good meal. All thanks
to Barb, we had a tremendous Honey Baked Ham with all the traditional
side dishes. I made not one thing. Barb even had the food delivered. I
do have the best friends in the entire world.
Ryan crashed from exhaustion at 6:30 pm. We soon followed.
December 16, 2004:
Bright and early we made our way into the office for counts check and
possible platelet transfusion. It was anticipated that his counts would
be low beginning Day 7 to Day 10. Today was Day 7.
His counts were "0" being represented only by blank lines. Translation:
no immune system. His platelets were 7 - a record low. On Tuesday they
were 40; they transfuse at 20 (or higher if a procedure is planned). His
hemoglobin started at 9.1 and went down to 8.0 by the end of the day.
Transfusions for red blood cells are in the 8s. We will return tomorrow
for a red blood cell transfusion.
After Dr. Horn examined Ryan and sent him off to continue to play with
his friends while awaiting his pentamidine and platlets, I had a friendly
talk with her. More than anything we reminisced. I think separation anxiety
was overcoming both of us. With the transplant at Duke on the horizon,
we will not see her for several months.
Ryan had an enjoyable time at the office today because his favorite playmates
were there and doing well enough to play with him. He and Ashley watched
a movie and hugged their Mogu dolls together. Ry and Michael crashed Ryan's
new (or new to him with the help of e-bay) Zeo power rangers into each
other and on the couch. Chastity played the nurse who fixed the rangers
when they were "broken".
With his hemoglobin so low, Ryan was nearly delerious when we left and
promptly fell asleep in the car.
Up and coming:
Meeting tomorrow afternoon with Dr. Perdahl to review the gameplan and
go over specifics. One thing for certain is that Ryan will need another
central line - the port will be removed and replaced with a new line.
He will need 3 lumens (access points) for the transplant. It is also expected
that he will get total body radiation with a cranial boost and a chemotherapy
agent called Melphalon. More details will be learned after the meeting
I would like to promise a picture album on line soon but I hate to make
promises I may not keep. I'll do my best.
I still hope to make it to Fredericksburg for the concert on the 19th
(I accidentally typed the 16th in last update). But my biggest hope, of
course, is that Ryan stays strong and wards off any infections. Remember,
I need you all to help him get to transplant without relapse or complication
from side effects. The focus is from today to January 8, 2005 since an
initial work-up at Duke is done from the 3rd to the 8th and treatment
should begin on the 8th.
December 10 to 13, 2004:
Ry is faring
well with the new drugs. The "mosquito bites" - as Ryan
refers to them (a/k/a Ki-1 lymphoma cancer on the skin) are
disappearing. We'll take all the small miracles that come our way.
The droopiness of his eye is also going away. We celebrated Chris'
birthday at the hospital. Ryan insisted that we light the candles and
sing our off tune version of Happy Birthday before we enjoyed the cake
that Chris brought to the hospital for his own birthday! Ryan got
Chris a neopet and some Pez candy. A great year for Chris,
were decent: ANC 6693, Hgb 11.1 and Platelets 77.
ended today with a bang. After finishing up with the Ara-C
which is given intraveneously, Ryan's leg was numbed with a cream
called EMLA and then iced for 5 minutes to prepare for the shot of
L-asparaginase. It's a shot that goes directly in the muscle and is
reported by most patients to hurt a lot. Ry told us he would be very
brave and just close his eyes when he got the shot. When it came time
to do it, he took his usual approach and watched the whole thing.
He was discharged
in the late afternoon - only to stop by home and
come back. Not literally, but it sure felt like it. In the early
evening, Ryan developed a fever of 102.3. The doctor had us manage it
at home with Tylenol but cautioned that another fever or other
symptoms will bring us back in. We made it through the night and then
at 6 am, he spiked another fever at 102.4. As it turns out, Ryan
slept essentially the entire time we were home. Time to head back -
just long enough for them to clean up our room.
We did have
some great visitors on Saturday but Ry wasn't able to
fully enjoy them because of the brewing fevers that kept in partially
At 7:30 am,
we checked back into the same room that we had vacated but
the day before. Ryan was hooked up to Vancomycin and Fortaz, 2
anti-biotics to kill even some of the most serious bacterias. It is a
precaution with Ara-C because that chemotherapy is associated with a
high incidence of a particularly dangerous family of bacteria.
problems continued - none for 5 days. It's not that his
body couldn't do it, but rather Ryan desperately tried to keep it all
in for fear it was going to hurt. He would be cheerfully playing one
minute and cringing the next. It's not a pretty sight. Aside from
the occasional bottom issues, he had a very good day. Daniel came by
with Amy. He absolutely loved seeing and playing with him. Daniel
read him "Walter the Farting Dog" and played Digimon. You just
replace a kid with an adult. They have a different language. Try as
I might to do the same things, it never comes out quite the same.
With the average adult the expressions, the jokes, and even the
attitude towards life is all slightly askew.
in the afternoon that hit 101.1. He continued on Vancomycin
and Fortaz. His counts were ANC of 10,192, Hgb of 10.1 and Platelets
at 60. The day ended pleasantly with a visit from Papa and Janelle.
So far so
good - No positive blood cultures as of yet. No fevers over
the entire day. If he remains without fevers, we will leave tomorrow
- which is also Christmas Eve in our house. Pretty exciting.
a very good day. He successfully pooped several times -
YEAH!!! He had stored up quite a bit over 6 days. It must make him
feel a hundred times better.
We made a
gingerbread house and read about bugs. He loves talking
about how the wasp stings the mosquito - we, of course, despise
mosquitos so anyone on our side is a hero of sorts. The wasp is now
our friend - with caution.
to know who was going to visit - the highlight of his day
is a visit from someone. When I told him it was Karen, he lit up. He
loves playing with Riley's mom. She battled with him with the weapon
he would give her. Of course it's never as powerful as the arsenal he
has. She falls down just at the right time and squeals in pain when
he waves his lightsaber at her.
ended with Mary Poppins in the VCR. Life is really good. A
spoon full of sugar makes the medicine go down.
The big medical
news is that the doctors have changed course with
Ryan's treatment. Although not yet set in stone, the plan is moving
in the direction of doing only a full allogeneic transplant. That is
a stem cell transplant using only a donor's cells. It is much more
risky than the autologous but if he successfully gets through it, his
chances of beating the cancer are greater. It's just really scary.
Not to mention I am an over-planner and am WAY behind the game if we
are going straight into the allogeneic transplant. It means we will
be heading to Duke soon. Dr. Horn thought we might go as early as a
couple weeks - and maybe before the traditional Christmas date. Yes,
that's sometime during next week. As you can imagine, I will be
trying to get things together in the next couple days.
to make it to the benefit concert in Fredericksburg on the
19th but I'm not sure how Ryan will be feeling or whether I will be
occupied getting ready for our long stay at Duke. As for Ryan, it had
been predicted that he will be very sick over the next couple weeks.
As for Duke, who knows when we will actually be heading down. We may
be there as little as 3 or 4 months or as long as 6 - and hopefully
that was held by the Stafford folks will likely cover 3
or 4 months of rent. I am so greatful and relieved not to worry about
that financial burden right now. I was expecting to make it down to
Duke at the earliest in May - I had thought I had plenty of time to
sort out the travel and lodging finances. Have I mentioned that I am
so relieved and greatful for the kindness of ALL of those who have
pitched in to help us. I can't imagine that worry over the next week.
It might have been enough to send me over the edge.
I love hearing
from you all that you enjoy some of the simple
pleasures of life because of your appreciation for Ryan's battle.
When you're irritated in traffic or feel like tripping the next
shopper who bumps into you, stop and think of something that makes you
smile - maybe watching your child sleeping; maybe the warmth of the
sun shining through the window on a crisp day; maybe Mary Poppins - it
just might alter your course.
Update December 8 and 9, 2004
Another relapse. But it could be worse.
MRI of brain: Shows infiltration in the muscle that moves the eye from
right to left. Infiltration is assumed to be lymphoma because there are
unnecessary risks to the eye with a biopsy. A biopsy would be appropriate
when you don't know that the patient has lymphoma.
Skin biopsy: Shows that it is his lymphoma cancer on the skin. Obnoxious.
CT of neck, chest, abdomen: Clean.
PET scan: Clean. This was a full body scan.
Spinal fluid: Clean. This is the test for the central nervous system involvement.
Bone marrow: The biopsy results are thus far clean but the testing is
not yet finished. For now, it shows no involvement after doing initial
exams and the flow symtometry test. The genetics testing is still underway.
The special stains were negative (meaning no sign of the cancer).
It didn't knock us off track too far. It is distressing to the doctors
that he relapsed after 2 rounds of carbo-ICE, but we are forging ahead.
He will do one round of a new chemotherapy combination followed by transplant.
There were a few options bounced around and after consultation, it was
determined that Ryan should get high dose Ara-C and L-asparaginase at
the hospital over a 4 day period. We checked in on Thursday. We were warned
with emphasis that he will likely be very sick on Christmas day. My solution:
Christmas doesn't have to be on the 25th. We're considering the 15th.
If the bone marrow is clean after all the testing, he will likely still
be able to use his own stem cells for the first transplant.
Radiation will be total body radiation and the timing of that is still
up in the air. The donor transplant will be last. And I mean LAST.
On Wednesday morning, Ry had another fever. It is suspected that it is
from the disease but anti-biotics were given to cover him in case he has
something brewing. His red blood cell are white blood cell (ANC) are still
very good - both on Wednesday and Thursday. And his platelets are low
but recovering on their own.
It is very obnoxious of his cancer to show itself so boldly. But as Greg
reminded me, it also gave us a warning signal that something is amiss.
Otherwise, he appears and acts fantastic unless we torture him with some
After a full day at the office on Wednesday, we made a short stop at home
and turned around again to go to Ryan's doctor's office Christmas party.
I think overall he enjoyed it. The high point was when he was sitting
in front of Santa and Santa glanced his way and said, "Hi, Ryan."
Ryan gasped and whipped his head around to me: "He knows my name!!!"
I explained that Santa watches and knows all boys and girls (it had nothing
to do with his name tag).
We are also planning for Santa to make a special visit to Ryan - maybe
at home. I told Ryan I met with Santa after the party and confirmed that
he planned to meet with Ryan alone. In truth, I have some volunteers to
dress up as Santa and make a special visit.
Thursday started off with a bang for Ryan because he woke up to having
his favorite people in the house: Chris and Angie. They came down from
Pennsylvania for a couple days. He proudly paraded them around at his
doctor's office. We knew that Greg and I wanted to meet with Dr. Horn
to go over the new protocol so it was a perfect fit to have them here
to entertain Ryan while we were disposed.
He enjoyed being the puppet master with each of us assigned a particular
task. At his command, we would each do our thing: like robots we moved
around the exam room in sync. It was a visual symphony. Greg wheeled on
the exam chair from one side to the next delivering a cup of water to
Ryan; Chris washed his hands in the exam room sink and tossed the wadded
up paper towel into the trash can that Angie had to open with the foot
pedal; and I turned the lights on and off and opened and closed the door.
He was a great conductor and the time seemed to go faster than the 5 hours
we were there.
We left there to go to the hospital. We arrived at the hospital in the
late afternoon. The chemotherapy was not ready and prepared until early
evening. The most dangerous side effect of the treatment is very immuno-suppressed
and the risk of infection. Particularly, he will be at risk for fevers
and a certain type of family of bacteria that lives on and in his own
body. We really do not have any control - just sit back and wait. Fortunately,
mouth sores are not generally seen with this treatment.
So yet another hurdle in our journey, but not insurmountable. I felt happy
at the party because I was there with my son. He was running around. He
was anxious to see his friends (other patients at the office). We have
a plan to make him well. With Chris and Angie, he was joyful. He basked
in their love. It was a good two days.
Update December 6 & 7, 2004
December 6, 2004
We timidly made our way into the office today. Although our fears
surface when Ryan is peacefully asleep, we have been able to enjoy his
good spirits and high level of functioning. Now it was time to face the
When we arrived at the office, several oncologists reviewed the rash.
It was the consensus that we are right. The skin biopsy of course was
done to confirm (or with some great stroke of luck - dispel) our suspicions.
Although we expected just a spinal tap to test some spinal fluid and a
skin biopsy to test the rash, we got the full works at the office.
During the spinal tap, Dr. Horn decided to go ahead and inject the triple
intrathecal chemotherapy of Methatrexate, Ara-C and Hydrocortisone. It
is too risky at this point to wait for results. The intrathecal (meaning
injected into spinal fluid) chemo is to rid the spinal fluid and brain
of cancer cells. It does not affectively treat the systemic cancer such
as the rash on the skin or anywhere else in the body. But the most dangerous
place for the cancer to grow is the brain.
Ry also had bilateral bone marrow biopsies (that means one on each side).
This is probably the hardest procedure to be present as a parent. Your
child's body writhes in pain while they chip off a piece of his bone.
The good news (can there be some - yes, there can): he does not remember
it due to the sedation. But mom and dad can't forget it.
We then drove over to the cardiologist because of concerns of his heart
functioning. His heart rate was extremely high and there was no logical
explanation. He also made a complaint, "My heart punched me."
A concern of Dr. Horn's was that there may be fluid around his heart or
some kind of tumor or blockage. His echocardiogram and EKG showed no damage
or fluid to or around the heart. His heart functions were all in normal
We then made our way back to the office for a red blood cell transfusion.
After getting there at 8:30 am, we packed our numerous bags (we always
bring a slew of bags - never know what you might need or want!) at 6:00
pm. It was a long day for Greg and I. What was humorous is that the day
was quite pleasant and speedy for Ryan. After his tubie was hooked up
to fluids, he was sedated at about 10 am - when he awoke at the office
at 5 pm, he noticed that he was unhooked and said, "That was quick."
He had NO idea that he had had several painful procedures, made a road
trip to the heart doc and got a bag full of blood. The blessings of drugs.
Ryan's white blood count was still excellent (ANC was over 3000). We desperately
wanted visitors for Ryan to enjoy when we got home. Taking on the task
with gusto, Lisa and her son Matthew came over followed by Karen. Ryan
wore them out. No joke. Beware any adults who visit the house: Ryan sees
you as a playmate. If you're out of shape, you may not be able to keep
On tap for the next 2 days is a PET scan, CT scan of his head, neck, chest
and abdomen, and an MRI of his brain. Dr. Horn is not fooling around.
The night was unfortunately eventful. At 1:30 am, Ry awoke in order to
vomit. By the time the bed was clean and he was tucked away under the
covers, I realized he felt hot. His temperature was 102.3. I awoke Dr.
Horn and she advised that since he was not neutropenic that I should give
him Zofran (anti-nausea drug) and Tylenol (controls temperature). Luckily,
after an hour and a half, his fever subsided.
December 7, 2004
A full day at the hospital for scans. Fortunately, they were able to squeeze
in the brain MRI so no return for a third day of anesthesia. All 3 scans
(CT, MRI and PET) were accomplished today. Krista and "Rachel"
met us there - Ry was thrilled to see them. After the usual long wait,
Ryan was under anesthesia for the entirety of the scans. Again, when he
awoke, he thought minutes had passed.
We arranged for Uncle Kenny to meet us at home when we got back at 5 pm.
A huge success. They played power rangers and watched Scooby Doo and Elf.
The only bummer was the stinging sensation when he peed because of the
effects of the catheter. I tried to get them to do the PET scan without
it but I learned there was a true medical benefit: there will be a better
read of the scan if they can keep the isotope that is injected for the
PET out of the urinary tract. If it means a better scan, we had to do
it. Sorry, sweet Ry.
We're scheduled to go to the office tomorrow to check platelets. When
last I spoke with Dr. Horn at the office yesterday, she told us they needed
to formulate a new plan and that she might decide that we need to check
into the hospital on Wednesday. We'll be prepared.
I have loved each and every message I have gotten since my last update.
Thanks for helping us through these trying times. Keep the good thoughts,
prayers, e-mails, etc coming our way.
Update December 3, 4, & 5, 2004
I write with some hesitation today. On Friday night when I returned from
the Stafford fundraiser, I was met by Greg at the door telling me that
the dreaded cancer rash appears to have returned. The stark contrast between
how fabulously Ryan is feeling and our fears is immense. The comparison
to a roller coaster ride doesn't even come close to the highs and lows
of the battle against cancer.
We are headed Monday morning to the office for a spinal tap and skin biopsy.
Whether it is only for my and Greg's mental health or because the cancer
has truly returned on his skin, we need your love and support more than
December 3, 2004:
The fundraiser in Stafford was on the 3rd. It was a phenomenal event.
I fear that it will get short shrift because of the cloud looming over
us throughout the weekend. The cloud was only over me and Greg. Ryan was
peacefully and thankfully oblivious. He had one of the best weekends of
his life. No joke - no exaggeration.
Let me focus on Friday evening briefly. My extended Stafford family and
the community were so amazing. I had a good time. I left the world of
cancer - even though the event was all about Ryan's cancer. His mood and
feelings were my barometer - and he was feeling fantastic. His counts
as we learned Friday morning at the doctor's office were very good (ANC
3300). When I headed off to the event, Ryan was screaming around with
Ben, his best buddy.
The event raised over $10,000 to go towards the costs of Ryan's treatment
at Duke!! The gratitude I feel can not possibly be described in words.
Many absolute strangers contributing to help my Ryan - MY Ryan. The 3rd
marked another momentus occasion: 7 years since the passing of my mother.
My sweet Bonnie. I felt that she and my dad were with me at the fundraiser
and had just as good a time as I did.
Saturday December 4, 2004:
Another fantastic day for Ryan. Barb, Mark, Ellie and Gabby came over.
It was like a party for Ryan. They chased each other outside (and made
more circles around the house than I am capable of doing) and played make
believe McDonalds. They also did some hugging of each other. I think Mark
was a little concerned when Ryan and Gabby were caught hugging alone in
front of the fish tank. They start so early!
Sunday December 5, 2004:
Broken record: FANTASTIC day for Ryan. The day started with Rich Leonard
traveling to my house with his race car. When I say race car, I'm not
referring to what we tell Ryan is our race car (our black Camry), but
a REAL race car. They trailed it here - it's the kind without lights,
no functioning opening doors and no treads on the tire with one seat in
the car. Rich is a detective in Stafford. He has taken on Ryan as his
personal cause. He has made Ryan's beautiful face and name part of the
car and he wears Ryan's name on his racing suit. Ryan ate it up.
Krista joined in the fun when Rich was still here. And although she's
due to have her baby in 3 weeks, she played chase with Ryan in the yard.
He was quite attached to her.
We continued to have visitors dotted throughout the day. All brightening
Ryan's day. The plan was to keep Greg and my mind off our fears and let
Ryan enjoy the day to the fullest. Every visitor happily complied. It's
amazing how big people really can enjoy a good chase. Andrea, Lisa and
Karen all stepped up to the plate like champs. And one small visitor helped
a lot too, Matthew (Lisa's son), rampaged through the house with Ryan
in the evening. We so needed and appreciated the visitors. Thankfully
Ryan's counts were so good so we could have that pleasure.
Please keep us in your thoughts and prayers. Let me know you're out there.
I'll let you know the results of the testing as soon as I know which will
likely be mid-week.
Update November 29 and November 30, 2004
Join me on Friday evening DEC. 3rd
My amazing friends in Stafford have organized a party / fundraiser benefitting
Ryan for this Friday December 3, 2004. If you are looking for something
to do, come on down and hang out with us. The funds raised will be used
to support Ryan when he travels to Duke for the transplant.
Great entertainment with local musicians - and a special performance from
a group of Polynesian dancers is planned. Really cool items will be raffled
all evening like a basketball signed by all the Globetrotters, gift certificates
from Wal-Mart, Food Lion and Starbucks, car washes, Nascar stuff and homemade
afghans. It's BYOB with mixers and light refreshments provided.
It's from 7:00 pm to 11:00 pm at the Stafford Volunteer Fire Department.
To get there, from Route 95 (either north or south), take Exit 140 to
Stafford. From 95 South, turn left at the light onto Courthouse Road.
From 95 North, turn right at the light onto Courthouse Road. Go about
1 mile to the light at Route 1. Take a right (southbound) on Route 1.
The Stafford Volunteer Fire Department will be on the left about 1/4 mile
Ry is doing better than anyone expected. It's absolutely unbelievable
and truly every moment is a gift. That is not to say that these drugs
have not abused his sweet little body. He has had some painful bottom
issues - I'll just leave it at that. And he has needed several transfusions
of red blood cells and platelets. But as we speak, he is doing his trot
around the house playing hide and seek with Evan. He hides in make-shift
forts and helped hang ornaments on the Christmas tree.
Last year the holidays brought some apprehension because the recent cancer
diagnosis left us fearful that we may not have as many holidays together
as we so desperately wanted. Now that we have traveled this road - and
especially with the new setback - I feel delighted to have the joy of
the holidays surrounding us. I think less about the what-ifs and more
about the certainties. We are together now and I can ask no more. We will
fight like hell to have a hundred more, but am happy to be enjoying this
Hope to continue to report great news ~
Update 11-23-04 to 11-28-04
I wish I could possibly describe how wonderful this past week has been
-- How blissfully normal much of it has been.
We started off rocky with complaints of mouth sores right on cue on Monday.
But then . . . they disappeared. His body successfully fought them off.
By Friday he had very few complaints of mouth pain and none over the weekend.
I'm confident that Glutamine had something to do with it.
I must confess, however, that I woke up every couple hours each night
since Wednesday wondering when the fever was going to begin. I was a little
edgy at times waiting for the bomb to drop. It never happened. Can I have
those moments back when I fretted over something that never came to pass?
You'd think I would've learned by now.
The Medical Stats:
Ryan had an appointment on Tuesday to check counts. A bunch of blank lines
started the page - that means his ANC was ZERO. No ability to fight infections.
His hemoglobin (red blood cells) and platelets were very low - necessitating
a return visit for transfusions on Wednesday.
We spent the entire day at the doctor's office on Wednesday (9 am to 7
pm) for Ry to get a red blood cell transfusion and platelets. His ANC
and white blood cell count was still zero.
Ryan has breakfast, lunch and dinner by way of a 12 hour infusion of TPN
that I hook him up to every night. This is in addition to the amount he
voluntarily intakes. He might actually get a little belly. He also gets
an injection of neupogen (to stimulate growth of his white blood cells)
at night through his insulflon.
His next appointment is Monday morning.
I will always remember Thanksgiving 2004. It's the year we had 2 celebrations
- each a gift. Ryan was almost giddy the last few days - making me think
he has some measure of understanding of what he was able to avoid. His
gift to us was the return of his quirky fun personality and countless
laughs. I ended this week knowing that I was the most fortunate person
in the world.
Update 11-20-04 to 11-22-04
In our house, the holiday was moved up to today, Monday 11-22-04. We robbed
cancer of a chance to rain on our parade. We cooked all day and ate all
evening. I do have a lot to be thankful for.
Backing up, we had a fantastic weekend. Saturday marked a bitter sweet
date. I loved seeing Ryan enjoy his brother and his Papa. But Saturday
was the day that we were supposed to be packing up our van and heading
to the Outer Banks. A trip that we had dreamed of for 12 months - since
Ryan's diagnosis. It was scheduled to celebrate Ryan's good health after
making it to the finish line. It wasn't meant to be - not yet. First,
we have to run another marathon.
In the midst of that tremendous feat, Ryan was capable of playing with
his buddy Ben. Despite his more feeble status, Ry played baseball and
rode his tricycle alongside of his friend.
Two of his favorites, Chris and Angie, came in town on Sunday. They had
planned to make the trip to the beach with us and therefore have the whole
week off. I told Ryan that Chris was going to be here for a bunch of days
in a row. Much to my surprise, Ryan stated very matter-of-factly, "Mom,
I'll probably get bored of Chris." I asked him why he would think
that. At which point, Ry reminded me that Chris had said that. I then
remembered that during a recent visit, I had told Chris how much Ryan
loved seeing him to which Chris then said that if he were here for a few
days, Ryan would probably get bored with him. Well, so far Chris is wrong.
Ryan hangs on his every word - and on him. Ryan will sit up snugly against
Chris and put his hand gently on Chris' arm or back. It's so sweet and
Chemotherapy is doing what we asked it to do. It is killing cells in Ry's
body. I can see it in his walk - awkward and clumsy - he walks flat footed
and complains of pains in his feet and legs. But he is still (slightly)
faster than his little brother. His mouth may be starting to bother him
as evidenced by a few complaints he is making. His skin is peeling and
itching like crazy. And according to all medical tests, the cancer cells
have melted away. Seems like a harsh way to get rid of a few renegade
cells, but they are horrible insidious cells. Thank God they have been
kicked out of his body.
So what can I be thankful for? I am thankful that those disgusting cancer
cells are currently out of his body. I am thankful for a wonderful supportive
caring husband. I am thankful for my healthy, chubby baby Evan. I am thankful
for in-laws that love us unconditionally and take on the role of parents
to me, my sons, and my sisters. I am thankful for countless friends, relatives
and strangers who are next to us every step of the way - always thinking
of ways to help uf and keep us going. I am thankful for every minute that
I see Ryan smile or dance to Beyonce or wrestle his dad. I am thankful
for the chance to fight for Ry.
Happy Thanksgiving to all of you who have yet to celebrate your family
Update 11-17-04, 11-18-04 and 11-19-04
Ry's counts continue to be really good. His ANC was at 4536 on
the 17th and 4770 on the 18th. His hemoglobin and platelets were high
enough to ward off a transfusion thus far. He even produced a few of his
own cells without the intervention of medicine. I'm cautious not to jinx
us, but this round has already been better than the last. One obvious
difference is that last round we started with cancer traveling the course
of his spinal fluid and around the brain.
We came HOME on Thursday afternoon!!!! Ry is in a better
mental place thus far. At the hospital, his choice of clothing was none
- yes, that's right: naked. As my mom used to say, Nothing wrong with
the human body. Amen, Bonnie. I guess he felt a measure of freedom - maybe
matching his feeling of having some control over his body. He has yet
to have any pains or effects associated with the sublethal drugs.
Our attempts to help him mentally have been successful. The real challenge
will be when the mouth sores return. It's what sends a chain reaction
in motion. If history is our lesson, they may appear around Thanksgiving
day. Here's how it goes: mouth sores create PAIN and depression (i.e.,
lack of eating, talking, communicating); the pain means he is constantly
taking heavy pain meds like morphine which doesn't help his activity level
and increses the depression; lack of eating creates malnutrition necessitating
the need for around the clock TPN which has damaging effects to the liver;
with malnutrition his immune system takes longer to get up and running
allowing infections to have an easy target. Curse the mouth sores.
Now here's the (potentially) fantastic news. We finally have a productive
suggestion to beat the mouth sores. Glutamine. Glutamine is amino acids.
Research suggests it can significantly reduce mouth sores. Why are we
just learning about it - despite asking every doctor, nurse, cancer patient
. . . Dr. Perdahl got information at the recent conference that she passed
on to us yesterday. When we looked it up on the internet, there is a lot
of information that had been out there suggesting it may be the wonder
supplement we hope it will be. Keep your fingers crossed, say your prayers,
Now to get him to drink it. We told him about it and he promised he would
try hard. He's so brave.
Improved mental health:
At the hospital, we arranged for Ryan to do a special cooking activity.
His favorite part was mixing together assorted ingredients like peanut
butter, salt, orange juice, squeeze cheese and bananna. We all ~happily~
gulped down the concoction. It definitely brightened up his day. A boy
named Marshall who had to leave his sophomore year in college after he
learned he had cancer made Ryan very happy when he came by to visit. Marshall
talked to Ryan like he was a friend and they compared bald heads. Ry talked
a little with him - but we got the most mileage out of it over the following
hours when he relived his time with Marshall by recounting it to us and
others who visited. Ry actually let me hold him and cuddle with him when
we got home. I was in heaven. I think touch is so important - but he has
pushed us away as of late. We had a blast on Thursday evening together
as a family. Really telling of his state of mind was his comment when
Evan was wandering off to some danger zone. He said to Greg, "Dad,
you need to follow him - I'll be okay." All while he's hooked up
to this monster size back pack filled with a heavy bag of TPN. There are
countless delightful vignettes I'd like to share with you that we've experienced
over the last couple days with our Ry-guy. I can't even recall them all.
Life is good.
We are hoping Ben can stop by this afternoon for an hour or two. It will
be the first time he's seen him for probably over 6 weeks. The longest
they've been apart since the time they could recognize each other.
Ry is scheduled to go into the office on Tuesday. We hope beyond hope
that glutamine defeats the sores - or at least greatly diminishes them.
Update 11-15-04 & 11-16-04
early we set out for the doctor's office. Ryan's ANC
counts dictated the day (and week). His ANC was 2300 which meant they
were high enough to start the chemo.
he underwent a spinal tap and triple intrathecal infusion of
chemotherapy into his spinal fluid. We opted against Versed to sedate
him and tried pentobarbitol instead with hopes he would wake up better
- and it worked! The only drawback was that he slept for several
hours - but well worth the wait. He felt rested and comfortable
instead of the usual painful weepy wake up.
It was not
until late afternoon that we got to the hospital to begin
the Carbo-ICE chemotherapy and the anti-medic infusion of BAD. He
arrived in good spirits. This was the very first time he went to the
hospital when he wasn't actually sick. Meaning, he wasn't going
because he had a fever or some other symptoms. It was fun for the
nurses to see the Ry-guy that we know. They hardly recognized him -
all chatty and witty.
He had to
have 4 hours of fluids prior to starting the chemo because
of the dangers of the drugs to the kidneys. It was about 8 pm when he
finally started getting the chemo.
The BAD infusion
led to some of the same endless crying episodes like
last cycle. You feel so bad for him because he has no idea why he is
crying. Imagine collick - only in a toddler. Oh how we torture him.
with the dosage and rate to get him more comfortable and
in a better state of mind. It led to a monster 5 hour nap midday.
Much needed rest after hours of crying. The evening was fun for him -
it was boys time with Ry and his dad - and I was asked to excuse
myself. I can't really complain much - I read a little in the hall
and met some new families. Us seasoned parents always recognize the
stare of the new parent.
His ANC was
3400 - a good number. His hemoglobin (red blood cells)
were hanging in at 9.9 and his platelets were low but not critically
with Dr. Perdahl about the game plan. There are still a lot
of details to be ironed out but the basic frame has been determined.
Ry will have 2 transplants and radiation. All of the doctors agree
that the best way to treat him is an autologous (means using his own
stem cells) transplant followed about 8 or 9 weeks later with a
mini-allogeanic (means using someone else's donated stem cells).
Radiation will likely be right after the first transplant. Currently,
there is much debate about total body radiation vs. cranial and spinal
radiation. The types of chemotherapy and the dosages of chemo and
radiation are also a work in progress. For now, I am happy to have
the shell so I can prepare - mentally, physically and financially.
for this week is to get the 3rd day of chemo tomorrow
evening and check out on Thursday. Then the drugs start doing the
real destruction in his body. Both for the good and bad. For the
good because they are killing all the bad cancer cells. For the bad
because he will undoubtedly be very sick again. If the last cycle is
our guide, then I expect him to get mouth sores beginning Tuesday and
the fevers around Thursday. Fevers will send us to the hospital. It
should prove to be an eventful Thanksgiving. The medical world is
incapable of stopping the mouth sores - maybe one day advances will be
made in that area similar to nausea / vomiting. We are certainly
hopeful that he will weather this cycle better than last time. One
good thing going for him: Chris and Angie will be here all next week
to lift his spirits. That mental component can make a big difference.
We're looking forward to some quality time with our entire family
over the Thanksgiving holiday - maybe we should have it a few days
early to avoid the hospital celebration. Although - it's not where
you are but who you are with.
Update 11/16 (by
Ryan and family checked into the hospital Monday
(11/15) for Cycle 2 of chemotherapy. His "numbers" (ANC) were
up around 2000+ which enabled him to proceed with this next round. He
will most likely be there until Thursday 11/18.
Update 11-12-04 thru 11-14-04
Some of you may think about the beach or Disney or hiking in
the mountains. For us, it has been the last several days at home. Alas,
our vacation comes to an end - Cycle 2 is scheduled to start tomorrow.
I have that same knot in the bottom of my stomach just like I do on the
last day of my vacation. I dread the vacation coming to an end.
We have enjoyed the last few days tremendously. Ryan has been active,
walking, talking, playing, eating, drinking and sleeping. They seem like
the basics but they are so much more. His wit is very sharp and his memory
is like an elephant. He has taken to reminiscing quite a bit. I love when
he rehashes things - no matter how trivial. I think it's his method to
cope with the last few weeks. There is probably nothing he would like
to remember from them. But there are memories that he can live in from
the past that bring him great joy.
Ryan's ANC counts (immune system) has been slowly going down. At Thursday's
doctor's appointment, his counts went down to 1200 - still a very good
number. On Friday, we returned to the office for Ry to get a red blood
cell transfusion. His ANC on that day was 700 - this would be neutropenic
in the hospital because of all the germs there, but not quite neutropenic
outside the hospital (outside hospital limit is 500).
As mentioned, we are scheduled to start Cycle 2 tomorrow the 15th of November.
The basic criteria is that his ANC is 750. If he meets that, then we will
start the day at the office with a spinal tap and triple intrathecal chemo
of Ara-C, Methatrexate and Hydrocortisone. After he awakes from the anesthesia,
we will then travel to the hospital and check in for 3 days of chemo.
Since we've never done this before, I'm not sure how it works. Do they
have the orders for the chemo before we get there and they're waiting
for us like To Go orders? We'll see.
He will then get the carbo-ICE (Ifosfimide, Carboplatin, and Etopiside
/ VP 16) chemotherapy and the 24 hour BAD (benedryl, ativan and decadron)
infusion. At the end of the 3 days, we should be able to return home -
hopefully to carry us through Thanksgiving. It is most likely that his
sores will begin around a week after chemo - so next Monday - and that
we will have to make our way to the hospital a few days after that to
manage the side effects. Our last stay for the management of the side
effects was 17 days. Hopefully this one will be shorter.
Stem Cell Drive
The first one was a huge success. It was incredible to see everyone there.
If you missed this one, don't worry - there will be more. We'll keep you
Update Wednesday 11-10-04
Best Day Ever
Wow - did
I say yesterday was like my birthday? Because today is hands down one
of the best days of my life. While I saw tremendous improvement in Ry
the last few days - compared to how sick he had been the last couple weeks
- he was a far cry from the Ry-guy. I reveled in the improvements - as
small as they may have been - because I was truly happy to see them. But
today blew yesterday away.
fun began when we got home. In the first 10 minutes of our arrival, Ryan
showed more enthusiasm for life than he had over the last month. He sat
up exclusively when we got back - in stark contrast to his limp body laying
on the mattress at the hospital. He had energy to play make believe and
wanted to soak in all that was around him. He asked constantly for food
and drink and even ate a good bit of it.
And he was
so sweet and funny. I think there comes a point when he is so sick that
you wonder when you will see him again. His mind was as sharp as ever.
His memory is incredible. When I was bringing in one of the 8 million
bags that we had, he noticed a hot/cold bag like the kind Barb has brought
to us every week for a year. It was so cute and astute - he saw that particular
bag and tilted his head in an appreciative expression saying, "Ahhh,
Barb brought us food - that’s nice - she knew we would be hungry."
I had no idea that he knew the weekly drop offs were from Barb and certainly
never imagined he paid enough attention to notice the type of bags she
review: Hospital notes and counts
belabor the end of the hospital stay because it is so not important in
the scheme of life - but his bandage change was not too good. He attempted
to refuse to allow us to do it and screamed and squirmed until we held
him. It will - for sure - get better. In fact, when we got home he reported
to Krista that it really didn’t hurt when he yelled. That stinker.
I’m sure in NO time, he will react the way he had for many months
before and just watch t.v. while we changed his dressing. His ANC count
was in the 3000s (yesterday was in the 2000s - I got a little carried
away when I told you 8000s). Still a great number representing his ability
to fight infections. The doctors are virtually certain that the blasts
were not cancerous although the final test is not complete. Ry’s
nutrition improved enough that he was taken off TPN for half the day and
will only need it at night at home until he eats and drinks enough on
We left the
hospital on a high note. Ry used "the force" to open the doors
and elevators at the hospital (I may have simultaneously pushed a button
that does the same thing but I’m sure that wasn’t the reason
that they opened). It was the start of the great time at home.
Ryan’s body is very weak. His muscles did not get much work the
last few weeks. When he walked down the hall at the hospital (maybe 25
yards), he would wind up panting with exhaustion. He is still quite weak
and wobbly on his feet - but the great news: He did not want any help
in walking and made several trips up and down the 4 steps to the downstairs
family room. He stumbled and fell on one of the steps on his first attempt
- which broke my heart - but the next few times he held on to a rail and
made it down without trouble. He told everyone who would listen that he
made it down (or up) without falling. I caught myself watching out of
the corner of my eye so I could jump up and rescue him if he fell - but
despite the struggles to remain upright, he did a great job and never
needed my services. I tried to act like it wasn’t a big deal - but
come on - it was amazing.
Cheryl helped us pack up at the hospital and unload at home. They were
his first playmates of the day. Later, Papa came over with Evan. We all
had a blast playing together. Ryan was enamored with Evan - until of course
he got close to his YuGiOh or Pokemon cards. But he chased him and hugged
him and watched him play ball - Evan’s favorite thing to do. Evan’s
nickname is "Bug" and we would roll the ball for Evan to chase
it and Ry would say, "Fetch, Bug!" and then break out into laughter.
It was amazing - we were a family playing together. We broke out the camera
in a frenzy - capture these moments. I felt giddy.
the evening, Chris and Angie arrived from Pennsylvania - such a treat.
When Ryan found out they were coming, he told us that he wanted to make
popcorn and watch a movie under the covers like they had done when they
watched Daredevil - That was about a year ago!!!! How in the world did
he remember that - in fact, Angie remembered it quite well but Christopher
had absolutely no recollection. I love watching his brain work. As requested,
we made popcorn and Ry, Chris, Angie and Papa curled up under blankets
and watched Dora the Explorer. During the Dora shows, he recounted to
his playmates - in great detail - other episodes of Dora and I caught
myself thinking, "Where do you store all this information, Ry?"
I don’t think Ry wanted to ever go to bed - this was his perfect
until Monday is to have fun. Nothing else - just pure unadulterated fun.
To that end,
Ry wanted Oggie to play x-box - The Simpsons - so he could "get busted"
(as Ry put it) when he drove into things and the police came chasing.
He invited everyone at different points to a challenging match of Yu Gi
Oh card battling. How he has the energy to learn about new guys and new
powers is beyond me. But there he was - telling me that this guy will
erase my power and that he had a card that could block my attacks. His
imagination was working overtime.
off to the doctor’s office tomorrow for a follow-up visit and check
counts. The next cycle is scheduled for 3 days beginning Monday at the
hospital. We are going to meet with the doctors next week to discuss the
CELL DRIVE - only 3 days away!!! This Sunday in Centreville,
For those of you in the Richmond area - or if you know anyone in the Richmond
area - friends of ours, Janeen, Scott and Martha, are holding one there
on December 9th. Janeen is such a hoot - she is combining the drive with
a "happy hour" and supplying adult beverages and snacks!!! There
is more information about it on the stem cell
link on this site.
every day I count my blessings. Sometimes it comes in the form of seeing
that others in our position have such little support. But most often it
comes directly from the selfless, thoughtful acts of friends, family and
strangers. I could not possibly recount all the fabulous things that have
been and are being done for us. I wonder at times, What could we possibly
have done to deserve all of this?
with my work - who have been a working force to provide us with great
comfort. I can barely imagine how people cope when their job is not supportive.
Not only is it a huge relief to feel confident and secure with my job,
but my work family actively seeks ways to improve our lives. I don’t
really know where to begin. I think if I listed it all here, none of you
would believe it. Sometimes I wonder how Andrea fits in her love for anyone
else because I am taking up so much room. She has become a woman with
a mission - endeavoring to get us support for travel and lodging. Jim
is - as I’ve always known - one of the kindest and most thoughtful
people I have ever had the pleasure of knowing. He is relentless is trying
to find ways to make things right - or at least better. And the added
financial stress is eliminated only because I have a compassionate boss
scared to get too carried away to tell you about our support because I
will probably forget so many wonderful contributions - each and every
one making our lives easier. But I have a need to recount some of the
many things - maybe to memorialize it - maybe to honor those who have
helped us - maybe to allow me to recognize how truly fortunate we are.
at the hospital, Adrianna arrives with a smile and some lotion. Yes, lotion
- I get a massage from her EVERY DAY. For those of you who know me, a
smile just went across your face. For those of you who don’t: that
is what I expect Heaven to be like - unlimited, constant massages. Her
daughter, Grace, provided a calming influence and got me to focus on the
bigger picture - a more healthy, holistic approach. It is true that if
we ignore our health and spiritual side, we will be of no use to Ryan.
So for her contributions, I am grateful.
those people organizing and holding a stem cell drive. It takes a lot
of time and energy. We just have to show up. They have to coordinate,
produce flyers, advertize, collect donations, and more. Thank you Colleen,
Janeen, Diane, Chris, . . .
is part of a team building a bike out of recycled parts in honor of Ryan
to benefit the Lance Armstrong Foundation. And even more overwhelming
to me, they have also decided to do another project to directly benefit
Ry in his fight. In this regard, the team entered a contest to build the
best bike in the country and then the bikes will be auctioned off.
has sent good vibes and thoughtful gifts - but even cooler - she has taken
it upon herself to contact Ryan’s doctor’s office and contribute
arts and crafts supplies. It is much needed stuff for the kids to play
with. Especially because many of the supplies are not recycled so that
germs are not spread.
is always reaching out to fill in any gaps. She took over my task of coordinating
the directed blood donations. And when I say take over, she has developed
a spread sheet - and well, some may say she is quite militant about getting
the donors out at a specific time. That’s one of her greatest charms
- a take charge / take no prisoners gal.
is so concerned about my health that she has taken it upon herself to
fight for medical care that I need.
Mark provide stimulating conversation (you have to leave the world of
cancer occasionally) - and a never ending supply of food - and so much
a special trip here despite it being 3 ½ hours out of her way -
each way - with her 3 children (to include a newborn). And John - I recognize
that you were a big reason it was possible. All I wanted to do was hug
her and be hugged. She followed up by mailing me some comfy hospital clothes.
Can never have enough of those.
to love and care for my other child, Evan. She considers the children
she watches to be her children. It’s why I wanted her as the child
care provider for both of my children. And she and Ryan have a bond that
I will (hopefully) never understand - as both have battled cancer.
is another cancer survivor who checks in regularly and lets me know that
there is life after cancer. A welcome reminder.
Angie lend their support by motivating people to care about the fight
against leukemia and lymphoma and raise money to support the cause. Angie
has also researched ways to tap into resources set up for families going
through this and has gathered information to get us plugged in.
possibly leave out our dearest friends Michael and Laura. They tirelessly
and relentlessly give of themselves. They are the ones who set up this
website and maintain it. They NEVER cease to amaze me. I hope you all
understand that they have their own business to operate AND have a toddler
(Ben), a set of twins that just turned 1 AND one on the way in February!!
And if we call, they drop everything.
I have gained
an undying friendship in this journey in Kim Gumabay. You all know her
as my guardian angel and Ethan’s mom. How she juggles everything
she does - I will never know. And I have taken up much of her free time
these days. I know it is a labor of love for her, but she will never understand
what she means to me. If you could see the materials she organized and
gathered for quest to find the best transplant care for Ryan - it has
more than impressed the doctors.
I call upon
Lisa Barnett with a moments notice. She is my sleeping buddy. If I feel
a need to have company when I am home alone after a day at the hospital,
she hops in the car and travels over. She always makes me smile.
in Utah. Despite that, she is coming out for a week to pitch in where
needed - and that’s even considering that she has a newborn and
an almost newborn. She also held a party / fundraiser at her home for
us and Lymphoma & Leukemia Society. You must be asking, "does
it ever end?" And no, it doesn’t.
Mary worry themselves silly over me and provide great comfort and care.
Nancy lives in Charlottesville but acts like she lives down the street
- coming over the moment she thinks I need her.
we be without Oma and Papa and Chris and Angie and Janelle? This is not
the time nor the place to review everything they do for us - for it would
take too many pages. They deserve a book of their own.
love is probably the most tender. Each one of them wanting desperately
to make my hurt go away and play the role of our beloved parents. Their
contributions, too, can not be described on these pages.
- I’m not sure I ever envisioned the relationship developing as
it has. I need her on my team. I trust her and love her. I think we are
very alike in many ways. She is tough and demanding of herself and anyone
who works with her. And she is fiercely battling for Ryan.
we have been at the hospital long enough to develop relationships with
the staff there. But as long as we’re there, we’re fortunate
to have care from excellent nurses like Kelly and Kimber. It’s more
than a job to them.
Mac are neighbors and friends. They are steady and constant. Judi is always
thoughtful and thinks of Ryan (and Evan) for every occasion. I know they
were devastated by the recent turn of events.
friends, Ginger, Mike and family are also neighbors. A really amazing
link between us - my friend Nancy went to highschool with Ginger and reconnected
at their highschool reunion a couple months ago. Her son, Mike, battled
cancer several years ago and he basically wants to adopt Ryan. Mike wants
to come and read to Ryan. How cool is he - he’s 11 going on 30.
They came over and raked leaves and have left little goodies for Ryan.
Another son of hers has adopted Ryan in his preschool class and they sent
pictures from all the kids to Ryan. The family sewed a blanket for Ryan
and dropped it off in his hospital room one day when we were out at a
surgery. He kept that blanket wrapped around him for the rest of the stay.
has mowed the lawn and is anxious to come back.
I have rekindled
a highschool friendship with Martha (Little) Johnson. The connection has
been very uplifting. Her son was also treated by the same group of doctors
as Ryan. He had a rare blood disease. His treatment included chemotherapy.
I find it courageous of her to reach out when it must touch so many frayed
nerves - and I find it comforting because she has been here.
The Holts neighbor - and now friend of ours, Daneen and family, made sure
Ry got a Halloween bag. But more importantly, she is there for Mrs. Holt
to help with Evan. We also got introduced by her to St. Peregrine who
is the saint for those with cancer. His picture adorns Ryan’s bed.
We have been
the beneficiaries of so many fantastic e-mails, cards, prayers, good wishes
and gift cards. Each and every one of you are on our team. I need you
all. When I get home late at night from the hospital, the first thing
I do is look at e-mail and mail. Despite all this tremendous support,
there are times we feel alone. No one can be in that room with the same
four walls - but us. No one can truly understand the suffering of cancer
- but us. No one can see Ryan’s eyes when they are dull and weary
- but us. It is at those times that we feel isolated. But to walk out
of the room and breath the fresh air and get words of encouragement from
all of you - keeps us going. You are all part of our team - and I welcome
all of you to the team.
answer what we did to deserve all this kindness. And I often wish that
I never had to find out that there were all of you out there - because
that would mean Ryan never had cancer. But this was the hand we were dealt
- and I certainly can count my blessings.
11-8-04 & 11-9-04...
Monday started off a little rocky. A spinal tap and triple intrathecal
chemo infusion were scheduled for Monday morning. The surprise: a
bone marrow biopsy was added.
Ryan's blood counts came back with a very freaky high number of
blasts. I learned that blasts are yet another type of immature white
blood cells. You hope to see none in the blood system. It is an
indicator of leukemia. That's how the day started.
It was Oggie's turn to stay over Sunday night so it was his
unfortunate turn to suffer through the news and procedure on Monday.
When he called me to deliver the news, my heart sank to my feet.
We will not get the test results from the bone marrow biopsy for 48 to
72 hours. It was not until late in the day on Monday when we learned
from the doctors that the general consensus is that the odd number of
blasts is as a result of all the growth stimulating factor shots he
has gotten over the last couple weeks - that's the neupogen and
luekine shots we've given him to stimuate growth of his white blood
cells. Since the original reaction in the morning to the numbers, Dr.
Greenberg had an opportunity to review the cells on the slide and said
that they did not look like anything he had ever seen before - by a
man who is a specialist in pediatric cancer for 30 + years. We will
not know anything for certain for a few days, but for now we are not
Otherwise, Ry is doing fantastic. His spirits are as high as they
have been since before the mouth sores. He ate a piece of bread with
butter and a few other tidbits. Excellent in my book. He was also
drinking a decent amount. Music to my ears: he declared to Kelly, his
nurse, in a very informative tone that his mouth didn't hurt anymore.
And I think I even saw Kelly's eyes well up. He enjoyed a visit from
Krista in the evening and was looking forward to her return -
especially with his beloved Rachel (Cheryl) in tow.
Last night's sleep was peaceful and completely uneventful. He is
officially off all of his antibiotics and is now only on the
nutritional supplement through his IV. The new central line is
working beautifully and since it's not a foreign device to Ry, it has
caused no issues for him.
We awoke to high counts. He is not neutropenic. In fact, he is in
the 8000s!!! WOW - a far cry from 0. That means his immune system is
up and running. And his mood was up as well. We started out by him
wanting to eat and drink - followed by his desire to play and use his
imagination. If each and every day is a gift - this was practically
my birthday. Oggie, Ry and I played a mean card game of Hiss and then
Ry made it to a hospital activity to make popsicle stick people. As
expected, Cheryl and Krista came by and brightened his day.
As for medical care, we were very low maintenance. Still no
definitive results on the bone marrow biopsy, but very encouraging
opinion by Dr. Horn that the analysis done thus far supports her
opinion that the blasts are a product of the neupogen and luekine
We are hoping to go home tomorrow evening for a few days and gear up
for start of cycle 2 on Monday. We'll keep you posted.
Update 11-5-04, 11-6-04 and 11-7-04
Lots of activity on Friday. First, the transfusion of platelets
0:dark-thirty. I was vigilant with flashlight in hand. Thankfully,
no hives, no fluid in the lungs, no issues.
Ry was scheduled to get his catheter for the apheresis (some of you
paying attention may have noticed the evolution of the spelling of
"apheresis" - I finally have it right). Anyway, unexpectedly,
arrived at 8:30 a.m. to go to the PICU for the process. Since the
procedure had been set for 3:30 in the afternoon, I had scheduled a
Child Life specialist to come in the morning to show Ryan what the
catheter looks like and where it will be. I had to improvise: Our
talk may have gone a little better if we didn't have to wake him for
the procedure. Most of his distress was around the fact that he would
have this big tube hanging out of his neck (and much too close to the
sore throat in his opinion) when he awoke.
A little bit of a shock for me was the size and strength of this
particular tube. It's basically a hard 8 inch tube about the width of
a straw. It's not very flexible. The best place for Ry given his
small size was in his leg - not his neck. I think he felt like he had
control over the situation when I told him that because he didn't want
it in his neck, I asked where else it could go and they said in the
leg - and so he belives that we changed the position because of his
concern. He wakened in the usual funk after anesthesia. I always
tell the surgeon and nurses that he does not wake well after
anesthesia but I don't think they believe me until they see it. The
tube in his leg caused him a good deal of discomfort and pain but he
was a trooper.
Now on to the good news: His platelets were very high at 200. His
counts (ANC) had improved - although not greatly to 448. Even better,
the percentage of stem cells (referred to as CD 34) was very high in
his white blood count. It seemed to be a very fertile time to harvest
the stem cells. There was quite a flurry around Ry by the blood bank
people when we returned to the room. I learned that the entire blood
bank team (docs and nurses and techs) had all been sitting in their
offices somewhere nearby everyday anxiously waiting for Ry's counts to
come up. He was the source of daily discussion and consternation.
First thing in the morning, they were anxiously awaiting the numbers
representing the daily analysis of Ryan's blood - just like I was
doing in a room on the 5th floor of the hospital - just like you all
were doing when you logged onto his website.
I'm told that he presents quite a puzzle. A term I have learned not
to like over the last year: at this time last year his pediatrician
used the same phrase, "You are a little puzzle, my dear." At
felt something close to pride that he presented a challenge. I now
realize that something is very unusual (and maybe a disaster in the
making) but modern medicine has no idea what it is or how to address
For the apheresis, a large machine that looks like a spaceship control
panel was wheeled into the room and Ry was hooked up to it through the
catheter. The stem cell harvest began without a hitch. At least for
a few minutes. Shortly into the process, the machine indicated that
there was not a good flow. It usually indicates that the catheter
position in his body is up against the wall of the vein. It most
often can be rectified by re-positioning the patient. So Greg and I
moved Ry in every imaginable position - right leg in the air, pillow
under the butt, roll over on left side, turn knee in - you name it, we
tried it - all of it causing pain for sweet Ry. Nothing worked.
Then a blood clot pulled out of the tube - and then another rather
large stringy clot. The diagnosis made: Ry's blood was doing exactly
what we programmed it to do with all the platelets, it was going to
the wound and plugging it up. Of course this can be a dangerous
situation because the force of pushing anything into the line can
cause a blood clot to go into the bloodstream. The doctor assured me
that he was not in danger and a medicine called TPA was put into the
line to dissolve the clot. Ry has had to have this medicine with his
former central line so I felt confident it would work - I was just
glad the clotting was discovered before it was pushed into him. We
had to shut down the machine and wait 2 hours. My anxiety was raising
because I knew the stem cells were right there waiting for us to pluck
them out - I wanted to suck them out myself!!
And finally, a good harvest - strike that - a fantastic, unbelievable,
almost "puzzling" harvest. They were shooting for "4"
stem cells. I
think it represents 4 million per killogram of weight of Ry -
something like that. Generally, they need 2 to transplant and like to
get double. Anyway, they thought they got a decent amount and would
be back in the morning to hook him up again for round 2. And then the
nurse called late in the evening, they got 7.2!!! Phenomenal. He will
be unhooked tomorrow and no more harvest is needed. I must confess
that I wanted more - 83 would be a good number in my book, but under
any definition, we got a whole lot.
Also very exciting is that - as predicted - Ry is feeling better since
his counts are going up. With the catheter in his leg, he was not
allowed to sit up or stand or walk, but he may have actually wanted to
today. He drank about 8 ounces of apple juice mixed with water - I
wonder if you all feel quite as excited about that as us - HE
VOLUNTARILY PUT SOMETHING IN HIS MOUTH!!!! He was talking a good deal
more. He was having fun bantering with Greg and even let me read to
Overall, uneventful. The catheter was removed - and freaked Greg out
when he saw how enormous and hard it was. It's hard to comprehend how
this thing - similar in length and strength to a chopstick - can be
inserted into Ry's tiny body. The apheresis seems to have sucked a
lot of the life out of him for the day. He slept nearly all day. His
ANC count slipped down in the 200s from 448. Bummer. Platelets were
back down to 64. We scheduled surgery for Sunday to have a new
central line placed with two access points. This means that he will
need a platelet transfusion again in the wee hours of Sunday morning
so that his counts are adequate for surgery.
Still no eating or drinking today but expecting it soon. Baby brother
Evan made an appearance at the hospital to cheer us all up. Ry was
sort-of unaware of his presence but Evan sure made me smile. Ryan's
cousin Daniel also stopped by briefly and provided the day's
entertainment for Ryan.
Drawing the short straw again, I awoke at 3 am (after going to sleep
at 1 am) in order to keep watch over the platelet transfusion.
Thankfully, no reaction.
We were wrenched out of bed again in the morning for the surgery.
It's preferable to have it early in the morning - especially because I
would have to stop him from eating or drinking if he was interested -
but it's just a bummer when it follows on the heels of very sleep
Surgery went very well. It's funny how some of the risks associated
with surgery aren't even thought of anymore. I'm probably more
concerned about him crossing the street than him going under general
anesthesia. The wake up this time was even fairly pleasant - the
usual propofil was followed by fentinel when he was starting to wake
and it seemed to work. Always good to find better ways to help him
Ry's counts (ANC) rebounded to the 500s and his platelets were a whopping
One issue that still needs to be worked on is Ry's nutrition. I am
planning to try to get some experts involved in this department. It
is the area that I feel least knowledgable about and one that I think
would be a big mistake to ignore. Some of his levels have been and
still are critically low. Because of this, he had surgery on Sunday
morning for a new central line. This is the "tubie" that he
year ago. We wanted to wait to get it until after these 3rounds of
chemo and right before the transplant to make sure it was in pristine
condition for the transplant, but it seems that his body is taking too
hard a hit and we need the ability to put multiple medicines in at a
time. The nutritional supplement (called TPN) that he has been
getting is not compatible with many of the drugs he has been getting
so the TPN is turned off for many hours in the day: hence, no
nutrition getting to him at all. With a central line that has 2
access points (called lumens) coming out at the end, we can keep the
TPN running at all times.
As I look out the window, I see a bright crisp day - matching my
feelings. We have successfully made it out of Cycle 1 of 3 for the 28
day cycle of chemotherapy pre-transplant. Next week (Thursday is
actually day 28), we begin Cycle 2. The plan is to have a spinal tap
with triple intrathetcal chemo tomorrow (Monday) and then hopefully go
home on Tuesday or Wednesday. Dr. Greenberg gave us the option to
wait until next Monday the 15th to start the new cycle if we wanted a
little more recovery time for Ryan - we accepted. We hope with the
knowledge we have learned over this cycle that next one will go
Cell Blood Drive - FOR EVERYONE!
the Support Page
to learn about more ways you can help (posted by webmaster).
- Ryan's counts (a/k/a ANC) inched up to 210!!! We're
finally getting somewhere. When his white blood cell count goes up in
his blood, he will have cells able to repair the mouth and throat
sores. Also, infections do not pose as great a risk because he will
have some immune system to fight them off.
were critically low at 19 as evidenced by bloody noses
and bruising easily. The magic number for transfusions is under 25.
Platelets cause the blood to clot. A very important function
especially when you get a cut or a procedure that punctures through
the skin. The docs won't send the kids into a procedure until they
have at least 100 (translates to 100,000) platelets because of the
risk of bleeding. Ry is scheduled for a procedure tomorrow to get the
placement of the catheter.
For the low
platelet count alone, he was transfused this afternoon.
Ever since the very bad reaction, we're a little on pins and needles
when he gets platelets. I expect that to be the case every time he
gets platelets. He was pre-medicated with Tylenol, Benedryl,
Solu-Medrol and Zantac. Even with all the precautions, he had the
beginnings of a reaction in the middle of the transfusion with some
hives and was given more Benedryl which did the trick. In order to
get ready for the procedure tomorrow, he is getting a transfusion at 4
am tomorrow morning and scheduled to get another one during the
procedure or in the afternoon.
his counts have improved, we're gearing up for pheresis (the
harvesting of his stem cells). In order to do that, the catheter
needs to be put in. The catheter is a rather large flexible tube
placed straight into a vein into his neck. In order to conduct the
pheresis, they plug his catheter into a machine that does all this
fancy stuff to pull out stem cells. They expect it to take 2 days
although could be longer.
delightful news is that Ry's spirits improved some today.
Although very tired from all the Benedryl, when he was awake, he
engaged his dad several times. He and Greg drew in an Activity book
and later tossed Pokemon bean bags at one another. He even sat up on
his own for a few minutes. He also enjoyed comic book stories read by
Uncle Chris. There's nothing like seeing a little bit of the Ry-guy.
Still no eating or drinking but he did say a few words here and there.
Soon he'll be talking up a storm as usual.
midnight and I need to get a little sleep so I can be up
and alert at 4 am for the platelet transfusion. Hope you all are
tucked away in your beds.
Slight improvement: Ryan's "counts" were at 6. That
count is called his ANC - absolute neutrophil count. Extremely low but
better than 0. We want AT LEAST 500.
As for the counts thing, I think I have confused many people and will
try to clarify it. There are 2 different types of numbers I have been
talking about in the updates. One is the number of white blood cells in
his spinal fluid. We want none. The other is the white blood cells in
his blood - we want lots.
The white blood cells in the spinal fluid represent either an infection
or cancer in the central nervous system. Ryan's cancer is lymphoma. Lymphoma
is cancer of the white blood cells. So it's white blood cells that have
gone mad. The spinal fluid should have close to 0 white blood cells in
a healthy person. If there are certain types of white blood cells - the
ugly big squishy fast growing cancer cells, things are grim. If there
are lots of white blood cells that look healthy (small ones), they went
there to fight an infection.
The white blood cells in his blood represent his immune system. They grow
and live there. They stay there until they are needed to go fight off
an infection. If they are not there, as is true of most people undergoing
chemotherapy, the person is in serious danger of contracting an infection
that can be life threatening because they have nothing to fight it off.
Very confusing. Anyway, both have been at 0. Thrilled to have the spinal
at 0 - not so with the blood. Although, I'll take low counts (white blood
cells in blood) and fighting infections over cancer.
Ry's spirits are not so hot. And who can blame him. He brightened significantly
with Uncle Chris' visit. We're working on getting him at a better place
mentally. I'm assembling a team and have great faith that we can help
him out of this funk.
The catheter placement is tentatively scheduled for Friday. Keep your
This is not
a broken record. Ryan's counts were 0 with no segs or
placement was postponed again. No set plans this time.
We increased the neupogen by double (75 micrograms) and added leukine
(75 micrograms). Leukine is like neupogen but it stimulates growth of
a different kind of white cells than neupogen. There is really no
data to support that it will work but Dr. Horn does not want to sit by
without trying. She is also having us actually poke him for the shots
as opposed to putting it into the implanted insulflon device. If it
works, we'll be happy to do it.
Ry was quite
lethargic all day - not even remotely interested in
playing or putting up with our lame suggestions for fun. Needless to
say he was even much less interested in the forced walk, the painful
mouth washes and medicines that we shoved down his raw sore throat.
at 11:30 p.m., things significantly improved: his Uncle Chris
came in the room. A surprise visit from Pennsylvania. And when I say
he perked up, he actually looked at Chris when he talked. He pulled
out goodies - like a rubber bat and little aliens - that had been
sitting in a box next to him on the bed for days without being
disturbed. He held a finger puppet ghost on his finger and scared off
Chris' guys. All while laying down but there was a little sparkle in
his eyes. A good way to end the day.
I have high hopes for tomorrow.
Update 10-31-04 and 11-1-04
at "0" counts with no segs or bands (which are the names
for the baby white cells) on Sunday and Monday. His mouth and throat
sores are marginally better - although he might not think so. The
theory: white cells are coming back but they are immediately getting
used up to fight all the infections (like the sores). His mouth is
very swollen and some of the sores are turning white (sign that they
of the catheter for the harvest of his cells was
postponed to tomorrow (Tuesday). I'm anxious for it to be done so we
know we have the cells in the bank. One drug called Carboplatin (the
"C" in his ICE cycle) knocks out the cells in the bone marrow
really want it to be done before the next ICE cycle starts.
a relatively quiet Halloween in his room. We had 2 electric
pumpkins lighting the room along with a few glow sticks. The closest
we got to getting the red power ranger suit on was when Ryan pointed
it out to a nurse. But we started Ry's candy collection so it's ready
for him when he's up for it.
Ry at the hospital in his bumblebee costume. He was
happy to see his big brother. The bug (Evan) also had fun showing off
his new walking abilities - impressing all the cute nurses and Dr.
Horn. He likes the cute girls just like his big bro.
also brought the marathon. Jim Peterson undertook the feat
of running the 26 miles in honor of Ryan. He had the sweetest
t-shirts made up with a picture of Ry and a slogan, "Running for
on it. My heart grew a few sizes when I saw the shirts. They tell me
they're selling them. If there's interest, I can find out who to
contact to get one. Karen (Jim's wife) also took over my task to coordinate
directed donors lined up regularly - this is for B+ blood
type. I had a list of 6 donors but the task has become a little much
for me as of late. The
day Karen took over she was able to recruit
several more donors. Those of you already on the list, Ry has needed
2 transfusions in one week - so much more than the previous chemo.
Karen will be contacting you to ask you to go donate. If anyone is
interested in donating B+ blood (and she could probably help you if
you wanted to buy a t-shirt), contact Karen at
forget about going to the stem cell drive on November
VERY IMPORTANT for those of ALL blood types. This is probably the
most critical thing I have ever asked any of you to do. Only one of
you may be a match for Ryan - and that's not a sure thing - but any
one of you could help some one else who needs a transplant to live.
Colleen Gentile is hoping to hear from you all so she can get a head
count prior to the drive. All of the information is available on the
stem cell drive page.
We just finished
getting Ryan up and about for a walk down the hall.
It wasn't accomplished without a protest, but so important to ensure
fluid doesn't settle in his lungs causing pneumonia. He had just
gotten his morphine so we struck while he was under the influence.
We're hoping tomorrow will bring more cells and less morphine.
segs or bands - translation: 0 counts and all the yucky side effects to
go along. His headache was most worrisome because it was breaking through
the morphine doses. Dr. Horn decided to move-up the spinal tap and triple
intrathecal chemotherapy to today.
The amount of spinal fluid that came out during the tap was significant
which is indicative of a large number of cells growing. Dr. Horn was clearly
interested in making sure the cancer cells were not still growing after
all the chemo. Unfortunately, Greg and I allowed a tremendous amount of
fear to creep in. I won't let you live through the torturous hours that
we did: THERE WERE 0 CELLS!!! A perfect score for us and a big defeat
Ry's neupogen shots will be doubled beginning tomorrow to try to get his
body ready for feresis (harvesting of his stem cells).
update 10-29-04 (plus a little extra since the last update):
During these intense times, I thought it would be best to do a short daily
update. I know that many of you are desperate to hear how things are going
- and even more compelling - I am desperate for you all to be desperate
because I need to share the burden. Of course, it
is impossible to stay on the phone all day and talk to each caller - not
to mention the emotional drain. So here goes . . .
released last Monday, we had a pleasant week. Ryan's
energy level was getting low, but otherwise good spirits. Thursday we
went to the office for a spinal tap and triple intrathecal chemo
(Ara-C, Methotrexate and hydrocortisone pushed directly into the
spinal fluid to attack and prevent cancer in the central nervous
system). The spinal fluid was reviewed to see if there was evidence
of cancer still there - in the spinal fluid, you do not want to see a
high number of white blood cells. If there are 3 or less white blood
cells for 2 straight spinal taps, he's considered clear of cancer in
there. It was 3 on Thursday and the previous Monday was 1 white blood
cell. Looking good.
as has been referred to you all were beyond low. What I
refer to when I say "counts" is his Actual Neutrophil Count
which is a calculation using his white blood cells in the blood and
segs and bands which will grow up to be white blood cells - this is
the measurement of the immune system.
he had (and has) no immune system. On Thursday at the
office was the first time I had ever seen blank lines across the page
for his counts. It was Day 7 from the ICE cycle so now we know it
hits hard at that time. The estimate of when counts will be low on
this chemo is 1 to 2 weeks.
We made it
through most of the weekend without anything overly
eventful other than the return of the mouth sores. Sunday evening Ry
got a temperature - day 11. We made our way to the hospital where we
He got his
first platelet transfusion on Monday and as you all heard
from the update Michael so fabulously put on the website, it didn't go
too well. And that's not according to mom and dad who sometimes have
a different standard of "bad" than the oncologist. This was
considered a bad reaction by Dr. Horn.
Wednesday, Thursday and today are basically all the
same. Sometimes one day melts into the next - a dangerous thing to
allow to happen and something we are trying to overcome.
Ryan began a hunger strike on Saturday due to mouth sores.
The sores escalated to the point on Monday that they were - by far -
the worst he had ever had. It's so funny because what was devastating
8 months ago with mouth sores seems like a cake walk today. Around
Monday, he developed mucusitis and the mouth sores traveled to his
throat. He became mute at that point. Mucusitis is a condition
wherein mucus forms all along the membranes of the mouth and coats
those areas. It is a very thick clear gummy substance. He constantly
sounds like a dental patient with all the extra fluids in the mouth
and it upsets his stomach when too much gets in there.
signals are getting sophisticated. It is both adorable and
tragic at the same time. His signal for "no, please don't make me
that" is consistent and heart breaking - his eyes bulge out and he
waves his hand back and forth frantically while his head moves from
side to side and he pleads with his eyes.
As it turns
out, his response is not uncommon for kids with such
tremendous sores. Why can't we make them go away? What are they
doing for him? I can hear your questions from here. They don't go
away until his counts go up. His body has to do it. We are giving
him a boost with neupogen but it's just not able to compete with these
very intense chemotherapy agents. It's a matter of time. How much
time depends on his body. In the meantime, we do everything we can to
make him comfortable with regular doses of morphine, and he is
administered preventative drugs like various antibiotics.
positive culture has been for CDIF in his stool which is a
bacteria that lives in all of us but is controlled by our immune
He has had
fevers everyday. The highest was 103 so for now we are
thankful they have stayed on the lower end of a fever. The
significance of the 100.5 as fever for cancer patients is that is the
indicator that something can live and breed that can be dangerous.
Hence, those preventative antibiotics.
approach is to focus on the fact that it means the drugs
are working - they're doing their job. I gave him a hair combing at
which point he became bald. And I must say, it's the best side effect
going. It doesn't hurt - at all.
saved the best news: the test of his bone marrow showed that
he has NO cancer in his bone marrow. A welcome surprise for us all -
to say the least. I - of course - was paranoid that the test wasn't
accurate so they agreed to do some more sensitive tests which also
confirmed no cancer in the bone marrow. We are now forming our plan
over the next few months.
agrees - Ryan's docs (Horn and Perdahl) and the experts in
Non-Hodgkins Lymphoma (Cairo out of NY Presbyterian and Trippett out
of Sloan-Kettering) - about the next three cycles of chemo as
described in my prior update. During that time, we are trying to
harvest his own stem cells in a process called feresis. It can't be
done until his counts go up and we really want to get them before next
cycle because carboplatin (the "C" in ICE) destroys and depletes
drastically. We need to get them before the next ICE begins. Our
target date now is early next week.
What we are
ironing out is the transplant. We are obviously happy we
might be able to use his. But it is looking like we may want to do
one with his and follow it with a donor transplant. According to all
experts, Ry's cancer is tremendously aggressive. His type of cancer
is aggressive - the fact that his returned in the midst of treatment
shows his is even more aggressive than most with his type of cancer.
We need to be equally aggressive in treating it. The only snag is
that insurance may not be on board - but that's just a distraction.
We are consulting
the same experts as above in addition to Dr. Martin
out of Duke who is a transplant guy. I actually have great confidence
in Ryan's doctors (Horn and Perdahl) and have developed a very good
relationship with them. For many reasons I have determined that they
are not competing for my business and only have our best interests at
heart. They have independently consulted experts. Dr. Perdahl is a
transplant doctor. She is considered excellent by those in the field.
The one thing I am not sure if I am comfortable with is this
facility. It does not have bells and whistles. I have learned that
it is accredited and that they have rooms that have positive pressure
and are hepa filtered. It's not a transplant floor alone. Ryan's
doctors have encouraged us to shop around because we need to feel
To that end,
I went to Duke yesterday. Pitifully, I felt like I was
on a roadtrip. Dr. Martin was fantastic. The gameplan right now is
for Dr. Martin and Dr. Perdahl to collaborate and come up with a plan
- which will include consulatations with Dr. Cairo. Dr. Martin is
encouraging us to stay here for radiation and the autologous
transplant (using Ryan's own cells). His focus is that we have an
excellent doctor, a facility equipped to handle an autologous
transplant, and a support system in place. For the donor tranplant,
we would go to Duke. As for the donor transplant, there is research
and consultations to be done before knowing the exact plan. In the
running is using Evan's cord blood. It was a fairly poor match under
many standards (in fact, many would say it was not a match), but Dr.
Martin is an expert in cord blood. Evan's is a 3 / 6 match. Dr.
Martin has tranplanted 3 of 6 matches IF there are a lot of cells
collected. We need to check with the blood bank storing it to find
out how many cells were collected so that's up in the air.
as ever is the stem cell drive - not only for Ryan, of
course, but for all those out there like Ry. Behind every door on the
floor of this hospital, is a kid who may need a transplant. Multiply
that by all the hospitals and you have to feel the urgency of getting
everyone you know to go in and get on the donor list. Also, there is
a greater chance that a drive done in the near future can yield the
one for Ryan because his donor transplant would not be until April or
We are now
coming full circle to last year. Eerily, we are in the
hospital for Halloween again. That is THE DAY we were admitted last
year. Ryan's costume is hanging on the cabinet doors in this room
ready to transform him into a Power Ranger if he feels up to it. I
wish desperately that he could join you all in trick-or-treating but
that will have to wait for next year.
Oct. 26th Update...
is back in the hospital
Sunday the 24th
Ryan was running a high fever (101+) on Sunday (24th) so they had to check
into the hospital late Sunday night. Fevers are very serious for Ryan
since his immune system is basically wiped out from the aggressive chemotherapy
treatments he is receiving.
Monday the 25th
It was a very, very tough day for them at the hospital. He had severe
abdominal cramping/pain and his mouth sores were also very painful. He
hasn't spoken a word in 48 hours because it hurts so much - nor has he
He was scheduled for a spinal tap in the morning but it didn't happen
until later that day. Unfortunately, during the wait for this, his fever
sustained because they couldn't give him any medications to bring the
fever down since he would be under anesthesia for the spinal tap (many
meds are not allowed if a patient is going to be anesthesized). Nor could
they give him any medicine for the stomach pain and severe mouth sores.
He was absolutely miserable. In fact, his only verbal mode of commmunication
is by grunting.
Ryan also received platlets today to "beef up" his imune system
because his platlet counts were well below the accepted range. This is
the first time he has ever had to have a platlet transfusion. Unfortunately,
he had an alergic reaction to the procedure and had to undergo more drugs,
pokes & prods to counteract the reaction. It was a very, very rough
day for Greg, Ryan...everbody - period.
Tuesday the 26th
Compared to all of the awful events from yesterday, today is much better
in terms of Ryan's comfort level because he is on a regular dose of morphine
(hard to stomach that this is "better" but again, he is MUCH
more comfortable). He is on antibiotics and fever reducing medicine as
well. He still has not spoken (3+ days now) but is using "grunts"
They expect to be in the hospital for a few more days.
We will continue to keep you posted. Please keep Ryan and family in your
Visit the Support
Page to learn about ways you can help!
October 21st Update - From LORI & GREG...
ALL PERSONS URGED TO PARTICIPATE:
CELL BLOOD DRIVE
Sunday, November 14, 2004
FROM 3:00 TO 7:00 pm.
THIS LINK for more information.
Turn of Events
many of you now know, Ryan’s cancer was sneaky and devious. It entered
into his spinal fluid where it had never before been and cultivated itself.
It swam in the fluid up and around his brain and then showed its ugly
self on his skin in the form of a rash. On Thursday September 30, unbeknownst
to us at the time - the cancer began to reveal itself. He vomited on Thursday
evening. An aberrant event as of late (without chemotherapy causing it)
but nothing overly alarming. Something he ate, perhaps? The following
morning he vomited again. And then October 2, 2004, brought a little better
health. Nearly 24 hours since he was last sick.
2004 was a big day on our calendar. Ryan’s doctor’s office
provided tickets to the Big Apple Circus for the day time and then the
Leukemia & Lymphoma Society’s Light the Night fund-raiser that
evening. We booked a hotel room at the Reston Town Center so Ry could
get plenty of rest and relaxation between the events. We made it through
the first half of the Circus as if we were a normal family. Ryan’s
eyes turned into saucers when the cats jumped through hoops and the horse
pooped right in front of us! The trapeze artists were beautiful and we
laughed silly at the clown. He was motoring down during the 2nd half but
made it through the show.
Once at the hotel, he tired out and we decided he wasn’t feeling
well enough to make the trip to the walk. He complained of bad headaches
and vomited later in the evening. A call to his doctor resulted in a "not
to panic" mode but keep an eye on him. On Sunday, Ry was in bad shape.
All day he complained of severe headaches and vomited seven times before
being admitted into the hospital. He had barely eaten anything the day
before and nothing on Sunday. It was not for another TEN days that he
ate another morsel. Talk about pulling out your heart - you feel like
you’re watching your child waste away to nothing.
Back to the beginning of the recent episode: Because it appeared to be
some sort of virus, he was discharged from the hospital on Monday but
readmitted late Tuesday after a day long visit at the doctor’s office
and a repeat of the horrible headaches and vomiting which did not resolve
the first day the bomb was dropped - the first time large cell lymphoma
was mentioned as a possible culprit for his recent illness. You could
have knocked me over with a feather. It was the furthest thing from my
mind - I know, you must wonder why it’s not the first thing I fear
when he’s ill. There comes a point in treatment when your child
responds great to the therapy and everyone - including the experts - believe
he’ll be cancer-free - at least until the end of active treatment.
At the meeting for "life after treatment", I was all but guaranteed
that we had at least until the end of treatment to be on guard for cancer.
I had 6 more weeks of worry-free time - at least I thought I did.
week: Then came the most difficult week of my life. I was praying for
a bad case of viral meningitis - as if that’s something good to
have. And my prayers appeared to be answered at various points of testing.
At first the tests from the fluid taken in the spinal tap leaned towards
meningitis. The markers (CD30 and CD3) were not detected in the first
flow cytometry test which is about 90% accurate - although the immunohistiochem
test was still needed. The lab mishandled the sample and there were no
cells to test for the immunohistiochem test - thus the flow cytometry
took on greater meaning and we thought we were in the clear. Ry was discharged
on Saturday. We needed to repeat the spinal tap and re-do the tests but
we were thinking we were home free. By coincidence (later determined to
be a cruel coincidence), Greg had an incredibly bad headache about a week
before Ryan’s symptoms appeared. It all made sense that it was a
virus that had transferred from Greg to Ryan.
was not as bad as the earlier part of the prior week - but occasional
vomiting and headaches were worrisome. But could easily have been a virus
resolving. The continued lack of eating and drinking also provided anxiety
- but again, plausibly the aftermath of a bad virus working its way out.
the cruel final answer left me hanging on by a thread. We returned to
the office on Monday and hydration was an attempt to help him get a boost.
Viral was still the focus. On Tuesday, he vomited again 3 times which
landed us back in the hospital until our discharge on Monday the 18th.
The flow cytometry of the original sample was re-done and sure enough,
they found both markers CD 3 and CD30 and a new one, CD25. It was the
return of the Anaplastic Large Cell (Ki-1) Non-Hodgkins Lymphoma.
I had a very
short time to grieve and then it was time to take action - the best medicine
for me to cope. No room for emotion - although it sneaks up on me more
than I care for - yet I understand I need to feel the emotions as well.
This re-diagnosis is more difficult than the first. Maybe it’s the
knowledge I have of the repercussions of the drugs - the damage it does
to the body - damage to the heart, stunted growth, low counts which create
a vulnerability to infections that can be deadly, muscle weakness, infertility,
learning disabilities - maybe it’s the suffering I know he will
have to endure - I only had vague ideas of what was in store before and
that ignorance allowed me to march on and allow the drugs to enter his
body without too much trepidation. I’m also painfully aware that
beating cancer that has metasticized during active treatment requires
the harshest kinds of drugs - and in Ryan’s case, a blood or bone
marrow stem cell transplant. At one point, Greg sat at the foot of Ryan’s
bed and asked who would be taking care of us. Of course that was answered
by the droves of dear friends and family who arrived at the hospital to
do just that.
We had a
sign up sheet and our close friends and family took shifts to be near
us to run any kind of errand and provide moral and emotional support.
I have no doubt that I would be in the depths of despair without our incredible
support. I recognize that not many are so fortunate. I am grateful at
every waking (and sleeping) moment.
medical information: The fluid from the newer spinal tap reconfirmed
the last test finding the markers in the flow cytometry and the immunohistiochem
tests. A CT scan and MRI of his brain showed no involvement in the brain
tissue (thank God) and confirmed the findings of the spinal tap that the
cancer was in the fluid around the brain. A CT scan of his neck, chest
and abdomen did not show any active involvement in his lymph system or
other organs (again, a blessing) although his thyroid was enlarged. His
skin rash was biopsied and determined to be his cancer. We are currently
waiting for results of the bone marrow biopsy. Essentially, there are
3 hurdles to jump over before you can say the cancer is not in the bone
marrow. Not until you clear all 3 hurdles can you say it’s not there.
The importance of the finding in the bone marrow dictates whether his
own stem cells can be harvested for transplant or whether he will need
stem cells from a donor. We have thus far cleared 2 hurdles and await
the results of the 3rd test.
Treatment: That brings me to what we know about future treatment.
He is scheduled to undergo 3 rounds 28 days apart of ICE (Ifosfamide,
Carboplatin & Etoposide a/k/a VP-16) through his port. Simultaneously
he has a peripheral IV with a constant infusion of BAD (Benedryl, Ativan
& Decadron). I think they should avoid the negative connotations and
call it DAB, but who asked me? He will also have a spinal tap with a triple
intrathecal infusion in the spinal fluid of Methotrexate, Ara-C and Hydrocortisone
two times a week until the fluid is clear of cancer plus 2 rounds after
that. He will get neopogen (a/k/a GCSF or filgrastim) shots every day
when off of ICE which boost his system to produce white blood cells.
Around January or February he will undergo a stem cell transplant (commonly
referred to as a bone marrow transplant but more accurately described
as a blood or bone marrow stem cell transplant). As mentioned, it will
be either from his own body or from a donor. It is more risky and requires
extra hospitalization to get a donor transplant. We will not know if he
is eligible to harvest his own until after the final bone marrow biopsy
results. He will also have spinal and cranial radiation either before
the transplant or after. The recovery from the stem cell depends on variables
that are too difficult to predict but expected to be anywhere from 3 weeks
to 3 months.
Ryan responded to treatment: We started the new protocol on Wednesday
the 13th with a spinal tap and the triple injection. Things went relatively
smoothly. The ICE and BAD infusions started on Thursday and ran until
Saturday. As the name suggests, BAD was quite bad. Ativan is a tranquilizer
and most commonly takes the edge off - not so with Ryan. He had one prior
Ativan experience when he was given it prior to a CT scan to help him
through - it did the opposite - he didn’t know which way he was
coming or going - weeping over nothing. Turns out that there is a significant
minority that respond in this manner. The Decadron presented the worst
side effect to date (but I have a feeling I’ll be wishing for just
this side effect when more come in the future). Decadron is a steroid
- angry is not even close to describing his behavior and mood - think
Exorcist. The problem becomes when he gets violent towards himself and
others. More to himself than anything. He wanted to rip out his IVs. A
solid 1 ½ hours went by when he was like a caged animal who wanted
to self destruct. Greg and I had to use force to stop him. It was followed
by extreme depression and hollow, deep crying. Ordinarily they give Ativan
for this but it was part of the problem in Ryan’s case. The Decadron
was reduced by ½.
After another episode not quite as bad as the first, Benedryl was increased
to try to induce sleep. It worked. My feeling when the day was done: we
got through it and it’s one more day behind us. And the good side
effect of Decadron - he is eating and drinking anything in sight - no
joke - he had at one point on his hospital bed: rice, gim (toasted seaweed),
pizza, gummy bears, sour candy, donuts, canteloupe, beef brisket, corn
on the cob, and I can’t remember what else.
truly resonated with me until now: Be thankful for each day and live in
the moment. It is how I am getting through each and every day. We have
had fantastic days since that BAD episode. He has otherwise responded
well and had minimal side effects. The Ki-1 skin rash is starting to go
away and he is happy and joyful. I wish I could capture a slice of his
personality for you all and share it with you. When he is not being tortured
by hospital procedures and is not under the influence of Decadron, he
is witty and goofy and happy to be breathing air.
He challenges his Uncle Chris to play Pac Man on his X-box.
He chases Aunt Angie with "the claw" - Ryan’s hand in
the shape of a claw. He is thrilled that his baby brother Evan is walking
(at 9 months old, mom is not quite as thrilled!). His eyes nearly came
out of his head when he saw him walking. He explains to Evan what his
tubies are doing and reminded Evan not to close his eyes when he was getting
a picture taken of him. He battles his dad and Michael relentlessly with
his Pokemon guys. He shouts out commands and attacks and knows hundreds
of guys names like Torchic, Treeko, Bulbasar and Ditto. He knows who every
Digimon evolves into and can describe what they look like: "you know,
mom, the one that has an elephant trunk and gray wings, can you find him
for me, please?" He hasn’t lost his manners - for the most
part - "please" and "thank you" easily roll off his
tongue - and he reprimands the characters on his favorite cartoons who
forget to use it.
He loves to watch the nurses do procedures and makes it known right up
front - "I like to watch and see the blood go into the tube."
He is protective of his tubies and insists that we act accordingly. We
are scolded if we sit on top of one. He giggles with his Papa when they
burp or pongu. He barters for "power" - our word for a present
when he does some medical procedures or cooperates in other ways to have
his treatment successful. We started with having him earn stickers and
then once he reached a certain point, he would get a present. Over the
last couple weeks we have been more liberal with the gift giving but intend
to work our way back to the incentive program - I must confess, I went
into my closet upon this recent diagnosis and pulled out a Christmas gift
I had bought him - I just wanted him to have a chance to enjoy it - life
is precious and sometimes too short. But he’s no dummy, he’ll
tell you that the earlier present was for yesterday’s pinchy (his
neupogen shot given daily) because we forgot to give him one for that
(and 9 times out of 10 he’s right). He’ll try to weasel one
out of mom and then dad to get a 2 for 1 sale. He loves to have his feet
massaged and will call out, "who’s gonna massage my feet?"
if he feels he’s being neglected - truly his mother’s son!
He loves to have company and tell them all about power rangers and communicators
/ indicators (the words he uses for the devices power rangers wear on
their wrists). He shouts out the colors of the rangers as they appear
on the t.v. He loves bugs and spiders and talking about what ants do with
the food they gather. And he discusses the day when he will turn 5 and
gone so far as to pick out a candle that he wants on his cake when he
and Facility Investigation: We have also formed a team to investigate
the best treatment under the best experts in Anaplastic Large Cell NHL
at the best facilities. I have an amazing leader in Kim Gumabay who far
exceeds any expectations. I can’t begin to describe how incredible
her efforts have been already. She has created a packet identifying all
the candidate facilities, a summary of Ryan’s medical history, and
a list of pertinent questions to identify the facilities that meet our
high expectations. If I had to estimate, I’d say she has put in
more man hours than most do in a work week - and that’s on top of
her duties as mom, wife, and employee. Due largely in part to Kim, we
can all rest assured that Ryan will be getting the best care that there
Cell Blood Drive - FOR EVERYONE!
is BACK HOME!!!
The Holt family left the hospital yesterday (Mon.) around 2pm after three
days of intensive chemotherapy (Thurs. - Sat.) and two days of recovery,
observation, and a spinal tap (on Sunday). They are all, needless to say,
thrilled to be home.
They were surprised when they arrived home to see a raked yard, freshly
mowed lawn and lots of Halloween decorations outside! A GREAT surprise
and a wonderful reminder that there's no place like home and there's nothing
like good friends showing their love and support!!
Today Ryan is going back to the hospital for a PET scan.
(PET scan info........ PET images show the chemical functioning of organs
and tissue, unlike X-ray, CT, or MRI which show only body structure. PET
imaging is very accurate in differentiating malignant from benign growths,
as well as showing the spread of malignant tumors. PET imaging can help
detect recurrent brain tumors and tumors of the lung, colon, breast, lymph
nodes, skin, and other organs. Information from PET imaging can be used
to determine what combination of treatment is most likely to be successful
in managing a patient's tumor.)
Ryan will be under anesthesia as his whole body is being scanned and the
scan takes over an hour. The entire procedure, including pre and post
scan recovery will take all day but does not require an overnight stay
at the hospital thank goodness.
The next procedure will be a spinal tap at the oncologists' office on
Thursday (21st) which also involves anesthesia.
Generally Ryan is doing well given all that he has been through. He's
a tough little guy indeed.
We'll keep you posted as things develop. Also we anticipate a first-hand
web update from Lori & Greg within the next couple of weeks.
Visit the Support
Page to learn about ways you can help!
October 15th (Friday)
Late Wednesday night, the doctors delivered the news in a 2 hour long
meeting with Greg and Lori...
Ryan has been diagnosed with lymphoma cancer of the central nervous system
(CNS lymphoma). The central nervous system consists of the spinal cord
and the brain. CNS is considered a brain cancer.
The spinal fluid tested positive for large cell lymphoma and the MRI showed
lesions on the brain. The lesions were not confined to one area of the
brain. The doctors at this time are more concerned with the lymphoma in
the spinal cord than the lesions as they pose a more immediate and serious
The doctors are in constant contact with one the premier specialists in
the field of CNS lymphoma at Sloan-Kettering in New York. Per their consultations,
Ryan immediately received a high dose of chemotherapy directly into the
Currently Ryan is being treated with high doses (higher than the previous
doses he has received this past year) of drugs for the next three days
at the hospital (thru Saturday). He will have several spinal taps done
over the next few weeks to ensure the treatments are working.
Needless to say, Lori, Greg & family are devastated by these turn
of events but remain optimistic and positive about the treatments according
to the doctor's indications (including the specialist at Sloan-Kettering
who has reviewed all of Ryan's medical records) that Ryan will respond
well to the course of action given his history.
Many friends and family question how Ryan could have contracted CNS given
the chemotherapy he has been receiving for the last 11 months. The
chemotherapy he has had this past year was directed at the lymphoma outside
his central nervous system. Ryan was not receiving treatment in the spinal
cord or brain because he showed no signs of CNS cancer. Due
to the fact that CNS lymphoma resides in the spinal cord and the brain,
the chemotherapy would not have reached those areas. It was only over
the past couple of weeks that he was starting to show symptoms leading
to the diagnosis of CNS.
HOW Ryan contracted CNS lymphoma is not known at this time. Though it
is widely accepted in the medical community that most lymphomas in the
head and spinal cord have probably spread from lymphomas in other parts
of the body. There is no conclusive proof.
The treatment will last 3-4 months and is very, very aggresive. The next
few months are going to be rough. The family will have to make several
visits per week to the oncologists' office for blood tests, spinal taps,
and examinations. And Ryan's resistence to germs and bacteria will be
very, very low as well. He will have to severely limit his contact with
others. Exposure to a common cold germ, for instance, can land him in
the hospital for several days or worse. So, visitations will be cut to
They will be in the hospital until Tuesday (subject to change of course).
A team has been setup for round the clock support at the hospital.
Here's how you can help.... TOUCH THIS LINK
October 13th (Wed.)
is BACK in THE HOSPITAL...
On Monday (11th) they went to the doctors office because the rash was
spreading. The doctors evaluated him and immediately scheduled another
spinal tap for
Tuesday morning (12th) as
well as a bone marrow extraction and a biopsy of the rash at the same
time. The procedures were done at the oncologists' office under mild anesthesia.
Upon returning home Ryan was throwing up every hour for approx. 3 hours.
A call was placed to the doctors office and they were instructed to immediatly
bring Ryan to the hospital and check him in. A head CT was ordered as
well as an MRI. The CT scan was done that afternoon and the MRI was scheduled
for this morning (Wed. 13th).
Ryan was alert and awake all afternoon and early evening yesterday (Tues.)
playing a lot with visiting friends and family. Ryan was very hungry and
ate pizza, lots of cool snacks, yummy yogurt, and he was drinking many
of his favorite drinks (he was able to do this because he was given anti-naseau
medicine in the morning so, he was keeping it all down and loving it!).
had his MRI this morning and is recovering from the anesthesia. We will
keep you posted on final test results when they become available.
As always, please keep little Ryan, Lori, Greg & Evan in your thoughts
October 11th (Monday) Update...
RYAN is BACK HOME!!!
Ryan and family packed up and went home on Saturday afternoon! The doctors
released him because 1. His symptoms were improving and 2. He was eating
and drinking on his own.
Needless to say, Ryan was thrilled to be able to go home - he cried when
he heard he was going home and said to Lori & Greg...."I just
want to go home".
night and Sunday were quietly spent at home. Ryan slept alot and ate and
drank a little. The rash is spreading though so they're heading to the
doctors office on Monday to get that looked at.
We'll keep you posted.
8th (Friday) Update...
An initial test came back negative on Wednesday
for something the docs were potentially looking for (serious).
They want to run another more reliable test to confirm the first test.
Can't go into detail right now. Just keep Ryan in your prayers. We'll
have results today. Thanks!
Later in the day update....seems the lab damaged
the spinal fluid sample so they can't run the more reliable (or more specific)
test today. Needless to say, Lori & Greg are beside themselves and
experiencing every possible emotion there is right now. The doctors are
angry with the lab, the family is angry with the lab, and if we gave you
the name of the lab, there would probably be a riot outside their front
The Good News....Ryan's headaches are less severe and he has been able
to eat & drink a little. He has developed a rash which the doctors
will be looking at today. Ryan is very tired - and tired of being in the
So, where do we go from here you ask? The doctors have ordered the lab
to re-examine all the tests they did initially and have ordered a series
of virul tests to look for other possible groups of viruses that may be
causing the symptoms.
October 6th Update...
is in THE HOSPITAL...
the last week Ryan has been feeling sick with symptoms including loss
of appetite, vomiting, and low grade fevers that came and went. After
several daily phone calls with doctors and constant monitoring, Greg &
Lori took him to the hospital on Sunday (Oct.2) because he continued vomiting.
At the hospital they hooked him up to IV and pumped fluids into him because
he was VERY dehydrated and hadn't really kept anything down in 5+ days.
They checked out on Monday and went home to let the fluids do their work
(generally the longer he stays in the hospital the more likely it is that
Ryan can be exposed to germs and viruses so, the earlier you're out of
there the better).
On Tuesday they went to the Dr.'s office for regular Chemotherapy where
the doctor's decided to send him back to the hospital because his symptoms
continued and he was not getting better.
The prevailing thought among family was that he had a bug/virus that he
was having trouble kicking. The doctors were suspicious that something
else was going on. They ordered a spinal tap at the hospital to check
for other possibilities (other than virul/bacterial).
On Wednesday (today the 6th) Ryan underwent a spinal tap in the morning.
He is currently recovering from the procedure. Unfortunately results won't
be available until Friday.
say a prayer for little Ryan and hope for the best.
We will keep you informed as soon as information becomes available.