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.
Bugs: Pseudomonas fluorescens putida, Stenotrophomas
maltophilia, and diptheroids. Try saying those 3 times.
Hospital stay: The bugs landed Ryan in the hospital beginning
with emergency surgery to remove his central line ("tubie").
As crazy as it sounds, the stay was overall good. A few negative cultures
and a coffee maker can make the world seem brighter.
Cycle 9 / 15: Trying to get back on schedule, Ryan got
his chemo and started cycle 9 on the last Friday that we were in the hospital.
Cycle 10 / 15: Ten - double digits - landmark.
Ryan's Hope: Angie and Rick Fontanilla have started a
team called Ryan's Hope for a walk to benefit the Leukemia and Lymphoma
Society in honor of ours truly. They are anxious and hopeful to get walkers
and donations. More information is available... CLICK
HERE. If anyone thinks they can either donate time to walk or donate
money, please consider this worthy cause. Mark your calendar: October
2, 2004: Light the Night Walk at the Reston Town Center.
June 1 to June 5, 2004:
Monday, June 1: Not the ideal start to the month: Ryan was called in because
of a positive blood culture. His counts were low at 600 and he was put
back on the hefty antibiotic Vancomycin.
Tuesday, June 2: Ryan was supposed to start Cycle 9 / 15 today. It wasn't
meant to be. His counts were too low at 500 and the issue with the bacterial
infection was troubling.
The beginning of a cycle means 5 days of steroids but the docs don't like
kids to be on steroids when an infection is present because the steroids
can mask symptoms of the infection(s).
We began neupogen shots that we administer at home to artificially boost
his white blood cell counts, and Ry was put on the 'round the clock Vancomycin
pump at home. Who needs sleep, huh?
June 6, 2004:
The wake up call. It's an out-of-body type experience when you're playing
and goofing around and the phone rings and you see "Inova Fairfax
Hospital" is calling you. Dr. Weil broke the bad news that they had
discovered new - and serious - bacterial infections as a result of cultures
of last week. So another bump in the road. Ryan was not exhibiting any
of the telltale signs of infection - thankfully - so the doctor told us
to plan to come in early Monday.
June 7, 2004:
I went to work hoping for the best only to get an urgent call that Ryan
has been pre-admitted for the hospital and surgery was being scheduled
for the afternoon to remove his central line. The infections that he had
were just too dangerous to take the risk. At first my heart sank.
For some reason pulling the line is a great fear of all parents - and
not done lightly by the doctors. Greg and I were not unlike all other
parents. First, Ryan has to go through the rigors of surgery to include
no eating or drinking for most of the day, anesthesia, the procedure and
recovery. I have not yet found it easy to look back at the operating table
when I'm walking out to see his little body laying in the middle of the
bed - he seems so small and fragile.
Fortunately, the surgery to pull the line is an easy one and Ryan did
fine. It was when he awoke alone in the recovery room with an IV in his
arm that he screamed bloody murder for nearly an hour after we got to
him. We ask every time if we can be there when he wakes up and they assure
us that it will happen - it has yet to happen.
The prediction was that we were going to be in the hospital for a long
stay. It appears that the professionals can't predict much better than
I as we checked out at the end of the week.
June 8 to June 12, 2004:
I was not in a good place when we first went to the hospital. I crave
information about his condition - but as the old saying goes: Be careful
what you ask for . . . One of the infections - most commonly referred
to as S. Maltophilia, is reported in one study to have a 40% mortality
rate. Kind of blows you away.
With that in mind, I was happy to have the disease infested tubie out
of my sweet Ry - get it as far away from him as possible. We still had
to hold our breath for negative cultures and no signs of infection - like
fevers, chills, vomiting, etc. Ryan was put on Vancomycin and Fortaz to
try to rid him of any infection.
I was acutely aware of how dangerous it can get when Ryan is without an
adequate number of white blood cells. I was reminded of a difficult day
my friend Kim had with her son Ethan when he reached temperatures in which
organs can shut down - and that's after his body was packed on ice. Whenever
I think of what she must have been feeling - I have to gulp back the tears.
But as low as that low, I get an exhilarated high when I recall that Ethan
made it through that horrible ordeal - only to ask his mom within hours
if they could paint Easter eggs - at which point he told her, "This
is the best day of my life." The emotional highs and lows of an innocent,
sweet child with cancer.
We told Ryan that there were bugs in his tubie and that it had gotten
too old so we needed to take it out. We told him that we ordered a new
tubie but it would take a while to get here because we ordered it from
far away. "Okay" is all he had to say - very nonplused.
Meanwhile, Ryan was motoring around like nobody's business. The hospital
has a Child Life specialist that runs a program with activities and events
for the kids. They also keep two playrooms fairly well stocked with toys,
books and craft supplies. Ryan was able to participate in just about all
the planned activities but seemed to enjoy playing with his Pokemon guys
in the playroom rice box the most. Almost every other hospital stay we
were confined to the room either because Ryan was feeling poorly or he
had evidence of contagious illness that could not be spread to others.
Ryan had a blast when Papa visited - dragging him to the playrooms and
showing it off like he owned the place. We also enjoyed visits from Amy,
Barb and Laura. Ryan loved his visits from Michael - as did we. The Sochas
brought all the joys and comforts of home living right to the hospital
room. It's hard to get a good cup of coffee on the hospital floor - not
when you have Starbucks coffee and a coffee maker! They also brought a
fully stocked cooler on wheels. And of course a dinner never went by without
Barb and Mark sending up some delicious meal - along with a goodie bag
for Ryan. Janeen sent us a care package that was a goldmine for a 3 year
old. What did I do to deserve such good friends?
And what of Evan while we're in the hospital? He visited with his surrogate
parents, Halmony and Papa. If truth be told, he would be happy to substitute
Halmony for his mom - and I don't feel bad about that. During these challenging
times, he is getting 110% love and attention - which is probably unheard
of for most kids that have sick siblings. We are so incredibly fortunate.
The week was overall pleasant as Ryan was feeling well and his energy
defied the numbers. The only drawback was the IV. On the first day, his
blood was drawn from the IV, but the doctor decided the cultures needed
to be drawn out of the arm to make sure there were no contaminants. Bummer
- pokies. The only time Ryan was driven to tears and fits.
If Ryan had negative cultures all week, he was going to have a PICC line
placed so he could get chemo administered again. The vein for the IV in
the hand is too small for chemo to go in. We tried to get an extension
with the IV to keep it an extra day (they usually last 2 - 3 days before
they are changed) but it didn't make it. It was working beautifully on
day 3 so I asked the doctor if we could keep it until the next day when
the surgery was planned for his PICC line. I hated the thought of having
to put in a new IV just to have it in for a couple hours before the new
PICC line was to be put in. The doctor gave us a green light. The problem:
Ryan's vein was not cooperative. Early Friday morning the vein blew. Kicking
and screaming (me - not Ryan), a new IV was put in before the PICC line
could be placed.
June 11, 2004: PICC line and Cycle 9 of 15
An ultrasound of Ryan's veins by a member of the PICC team revealed that
he did not have very promising veins. But it was his only option. He went
in for the PICC line surgery - once again no food / drink and anesthetized.
The PICC was successfully placed. A PICC line can last several weeks (and
sometimes longer). It is an implanted device that begins in a smaller
vein but snakes up to the superior vena cava (the large vein running to
the heart). The dressing change can not be done by us because the line
is not secured by sutures so its instability requires a home nurse visit.
It is also exposed on his arm which is a place that gets more action and
activity than under his shirt like the central line - just making it a
little more precarious. We must also not allow it to get wet at all -
making baths a challenging event. Plus water play is out which can put
a slight damper on backyard activities.
Although it was a week and 2 days behind schedule, as soon as Ryan returned
to his room from recovery, he was administered his chemotherapy and steroids
to begin Cycle 9. I was anxious to get things underway because the more
you venture off the protocol, the lower the chances of beating cancer.
We had a scare which still haunts me - around Thursday Ryan developed
a small red rash with raised bumps on his trunk - despite being on 2 wide
ranging, hefty antibiotics. The rash harkened back to the rash he had
the first week he was admitted in November 2003. That rash was biopsied
and found to be the cancer - his form of Non-Hodgkins Lymphoma has a skin
rash that sometimes accompanies it. The doctor thought the rash unimpressive
and told us to monitor it. Mysteriously, it disappeared once he was back
on chemo. Disturbing - but could be a mild case of paranoia.
June 13 to June 19, 2004:
Once home, Ry was back on the pumps around the clock - this time with
both Fortaz and Vancomycin. Each has to be administered every 8 hours.
One runs about 1/2 hour and the other runs a minimum 2 hours. Then, add
in the steroids and the flushes. But someone always comes to our rescue:
my sister Krista and close friend Cheryl are nurses. Cheryl came over
a couple of nights and took the midnight shift. What a great relief for
June 20, 2004:
A great day. The weather was outstanding. I think the day was a nice tribute
for Papa and Greg. Chris, Greg's brother, came down and Janelle, Greg's
sister, came up. We made dinner over here - and the real treat: neither
Greg nor his dad were required to do the grilling of the steaks - for
that matter, I wasn't either - Chris was slaving over the grill. Ryan
enjoyed his Aunt and Uncle - making them earn their keep, of course. And
Evan was a delight - he laughs and giggles like crazy. I was in the reflecting
mood: a year ago I thought Greg and his dad to be excellent dads. I had
no idea how good they were. I was not even close.
June 21 to June 26, 2004:
We have limited Ryan's activities and exposure even more than before -
we're just really stingy after the recent scare. He gets sick of our ugly
mugs so it's a huge treat when playmates like Papa or Cheryl come over.
Ryan's energy was lower this week - although as usual he ran circles around
me. He had a red blood cell transfusion on Thursday which gave him a big
boost. The only bummer with the PICC line is that since its smaller the
usual 3 hour transfusion can be up to double that time.
Ryan has developed a love for Pokemon and Digimon. How does this happen?
He was never exposed to it. The little Pokemon figures are his substitute
for friends and comfort him at home and at the doctor's office. He has
a great imagination with them and he can spend hours acting out games
and battles. E-bay supplied 180 little critters for 40 bucks so he has
plenty of company. The amazing thing is that he knows every single one
of them - and by name, if we know the name. He has us go on line to Pokemon.com
to try to find each and every one. He learns about their powers, their
names, and who they transform into. No kidding - months later he still
knows all the stats. They are truly sponges. Maybe I should pull out the
June 27 to June 30, 2004:
Cycle 10 of 15: Ryan began his 10th cycle with the usual cocktails of
Velban, Methotrexate, 6 MP, and Solu-Medrol. His appetite has been poor
as of late and so we were actually looking forward to the one good side
effect of steroids: hunger. Unfortunately the other side effects came
along for the ride, but we have all developed very thick skin and lots
of patience during his angry spells.
The big topic of discussion is whether he should get another central line
placed or whether he should get a port instead. A port is a device that
lies beneath the skin and so there is no tube on the outside of his body.
The biggest drawback is that to access the line inside his body, you have
to pierce the skin with a needle. We're told that it is a small prick
because it is only subcutaneous (through the skin) and that many of the
nerves are cut at the time of insertion so the site does not have as much
feeling. However, the trauma of the needle for Ryan may trump the day
which would lead us to go back to the old central line. Presently, he
has had to go into the doctor's office on many unscheduled trips for blood
transfusions or some other reason at which time they have to access a
line - that all adds up to another poke with a port.
The benefits of the port are that there is very little maintenance at
home - no flushes and no dressing change - unless the line stays accessed
by the needle for us to administer meds from home - which occurs at least
every 3 weeks for 5 days (hopefully no more antibiotic pumps). But the
less you access the line (like with the flushes), the less opportunity
to introduce infections. Plus there are really no limits on what he can
do. He can get in the bath or go into a pool without restriction - with
the central line he can get in an adult chlorinated pool for 1 hour and
then must immediately have a bandage change (not very appealing) - although
a step up from the current rule with the PICC line - no water on the arm
Decisions, decisions. Not an easy one for us. He's scheduled for surgery
on the 14th of July.
Other previews for July: My 20 year high school reunion
and Ryan's 4th birthday. I know what you're thinking - I must have been
a child prodigy to have been out of high school for so long. As for the
truly monumental event of the month: Ryan will turn 4 on July 31st. He
has gotten significantly taller in the last couple months - still a string
bean - but we are thrilled that he continues to grow despite the drugs
that ordinarily stunt growth. He looks fantastic. He is also scheduled
for a CT scan on the 29th of July to check for any sign of lymphoma -
it is a regularly scheduled scan done past the halfway mark.
On a parting note, I have a Ry-Guy story. When we started with the bathroom
issues when he was 2, the words that accompany the bathroom began to fly
around. I told Ryan that the word "butt" was potty-mouth - along
with various other words that really have nothing to do with the bathroom.
Ryan loves to try to get around the rules. First, he argued that when
he was in the bathroom, he could use potty words - I bought it. So occasionally
he would run into the bathroom when he didn't have to "go" -
just to use some of these fun words. Today, we were watching one of his
favorite shows, Lilo and Stitch. Lilo said "butt" while she
was talking to Stitch as they chased some bad guy on the beach - Ryan
turned to me and said, "Mom, it's okay, the beach is just like a
potty." And right he is.
Hope you all have a wonderful 4th of July holiday. We will certainly do
Ryan is HOME from the hospital!
Ryan and family came home from the hospital on Friday
night June 11th. He had surgery on Friday morning to put in the "pic"
line. The surgery went very well and he is home now where Greg & Lori
are giving him his doses of antibiotics every 4 hours by IV. Evan was
staying at Hominy's house this past week and is doing great as well.
8th Update (Tuesday)
Ryan went into surgery yesterday earlier than expected. The surgeon had
an earlier opening so, they took advantage of it and went right in upon
Ryan's arrival to the hospital. He came out of surgery yesterday around
3pm. The surgery to remove the "tubie" went very well. Ryan
woke up a little groggy and a little grumpy but quickly regained his playful
self and was ready for action! In fact, Ryan played with Lori, Greg &
Pop Pop (who came by to visit him last night) in the play room for a couple
Currently Ryan is on an IV with two drugs (Fortaz and Vancomycin) fighting
the infection he has.
Nurses will be taking blood samples (thankfully without having to use
a needle) for culture samples 3-4 times per day.
The cultures grow in the lab and determine when the infection
has been destroyed by the drugs. Once they get a "negative"
result, they can count down the days when the IV drug treatments can stop
(typically 2-3 weeks after the negative reading).
Also, the doctors will probably
will put in a "pic" line while he's in the hospital. It's a
central line leading to his heart to temporarily replace the "tubie".
The pic line is only meant to last around 10 days. The procedure is considered
a "minor/bedside" surgical procedure with local anesthesia.
Ryan will have to remain very, very still however while they perform the
For the next several weeks Ryan will be on an IV 3-4 times per day (12-15
hours per day). This will make for some pretty long days and nights for
sure. The hope is that the doctors will allow Ryan and family to head
back home and do the treatments there. Otherwise, they'll be in the hospital
for several weeks. Eventually, after the IV treatments are over, they'll
head back to the hospital for another surgery to put the "tubie"
of this morning everyone slept well last night and are in very good spirits...helped
by the fact that they can make Starbucks coffee at will in their room
(a little amenity sent to them last night by the coffee gods!). Ryan has
his favorite Pokemon figures with him at all times and is in great spirits!
always, messages of support can be sent to them by e-mail at firstname.lastname@example.org!!
We'll continue to keep you posted and let you know how you can help (dinners
maybe). Thanks for your continued concern and support!
Ryan is in the Hospital for Surgery...
was just diagnosed (yesterday..Sunday) with two additional bacterial infections
in addition to the one he was initially diagnosed with (Ryan was on a
daily dose of antibiotics since last week for this one bacterial infection
- read the last update below for more info.)
The reason for the hospitalization is to have his "tubie" removed
(the central line leading to his heart for the administration of chemo
drugs) because it is possible that one of the addt'l infections is a very
rare and very serious infection known as Stenotrophomonas Maltophilia.
They believe that the infection is in the tube. At this time it has not
been confirmed that that is what it is or that the infection is indeed
in the tube. The surgery is an emergency and precutionary procedure to
remove him from immediate danger. Ryan and family will be at the hospital
(Fairfax) for a minimum of 2 weeks (could be much more depending on the
treatment and recovery).
Surgery is scheduled for today (Monday) at 4pm.
DO NOT call them at the hospital at this time. We will update you as soon
as more information becomes available and he is out of surgery.
1 - June 1, 2004
o One round of chemo in May.
Overall a superb month.
o June 1 - getting off to rocky start in June.
As we speak, Ryan is at the doctor's office on an emergency visit because
a blood culture grew a bacterial infection. If things don't swing our
way, we'll be heading off to the hospital. If they do, we'll be doing
a happy dance at home.
first week of May:
Ryan's counts were low this week which resulted - unfortunately - in skipping
the Velban chemo scheduled for the 5th. Although I hate chemo with just
about every fiber in my being, Ryan needs it all to have the best chances
of beating the cancer.
In its place was a red blood cell transfusion since his hemoglobin (HgB)
dipped to 8.4. Ryan was able to receive directed blood donations as a
result of the kindness and good hearts of some of you out there with the
magic blood (B+ in this case). His HgB jumped to a phenomenal 11.5 in
one day after the transfusion - his energy followed suit.
Visit with Daniel. Earlier that week, Ryan visited with his cousin Daniel
(10) and his friends. Ryan was in heaven - running with the big boys -
and keeping up! His counts were - as is typical these days - low.
And for any of you who may have thought today's youth is degenerating
- - Daniel had explained to his friends that low counts for Ryan meant
that exposure to some sort of cold / flu - even if mild for them - could
be life threatening for Ryan. As a result, one of the 10 year old boys
excused himself and went home because he had a sore throat. So magnanimous
- and so impressive for a TEN year old!
The 2nd week of May - Cycle 8 of 15:
The three week cycle no. 8 began on May 12, 2004. Ryan's counts were good
to go for chemo. It was all rather event-free this round. Ryan did well
and was able to play us under the table.
The Hair. Amazingly, Ryan's hair began to grow
back this month. I think I am just about done predicting things. Why or
how - nobody knows. In fact, his behavior belies many of the numbers -
when his counts have been extremely low, he has had more energy than any
adult I know (that might not be saying much). The nurses / doctors look
puzzled when they learn he has no mouth sores, no muscle weakness and
that he has a good deal of energy with such low counts. I will never cease
to be amazed by my Ry-guy. Back to the hair. On the one hand, I claim
not to care about his hair. On the other - he doesn't look as sick with
hair so it thrills me. You never know what lies ahead and whether he will
lose it again, but for now - I'm enjoying it. The other day a lady commented
when she saw him, "Oh, he's got his summer haircut." And at
this rate, he may have to get one this summer afterall.
Ryan had his usual dose of "Papa". Absolute heaven. And his
Halmony (grandma) has more love for him and Evan than one heart can hold.
The third week of May:
No complaints. Ryan's Pokeman obsession dominated the week - and month
for that matter. An occasional visit with Papa made all the world seem
bright. Papa bought Ryan a fishing rod and Ryan was the first to catch
a fish on their recent visit to the neighborhood pond.
The 22nd was a huge event for Ry-Guy. He, his dad, Ben and Ben's dad all
camped out in our back yard. They had a blast. The only way that the dads
could keep up was to drink a gallon of iced coffee and eat chocolate covered
The week ended a little rough. On the 23rd - Oggie's birthday - we all
gathered together to celebrate. My whole family was able to get together.
In fact, if memory serves me correctly - it has not happened since prior
to Ryan's diagnosis. Well, I could see that Ryan was having a hard time
and knew that he might not be feeling well. In the late afternoon, we
took his temperature to find he had a fever. All of the blood rushes from
your face when you realize that your pretend world of not having a sick
child has come to a screeching halt. It was nothing to panic over - we
are far beyond that. But I had convinced myself - subconsciously - over
the last couple weeks that my child was not sick. After that realization,
I quickly reminded myself that we were fortunate to have such great weeks,
but that I needed to be ever vigilant.
Fourth week of May:
Greg and Ryan made trips to the doctor's office Monday, Wednesday and
Thursday. Again, the Velban chemo was skipped on Wednesday. Each cycle
is three weeks - day 1 through 5 of the first week consists of several
types of chemo and the steroids - along with the other regular drugs.
During week 2 (which turns out to be 2 days after the end of the 5 day
regime) and during week 3, he receives just Velban (a chemo). The following
week we start over again. It is the off weeks that we've had to skip thus
Ryan's IGG (representing antibodies) was extremely low so he underwent
the 5 hour transfusion to replenish his IGG.
Pulling through when we need it is Evan. He decided to debut his ability
to sleep through the night this month! And not a moment too soon. Chunky
and happy - he takes after my side.
We had no plans for the long weekend - and loved every minute. We, of
course, had to have our Socha fix so we met up with them one day. The
day is segmented into 3 sections for Ryan - before he sees Ben, when he
sees Ben and after he sees Ben. The only part that counts is in the middle.
June 1, 2004:
I was pulled out of court today for an Urgent call from Ryan's doctor.
The message was that he needed to come in right away. A message that I
dread but expect these days. Again, no room for panic. I found Greg with
Ryan at his mom's house and off they went.
As it turns out, the blood cultures drawn on the 24th (the day after the
fever) have grown. I have learned it is not unusual to grow after this
much time because some bacterial infections are very slow growing. At
first, I was encouraged that they thought it may be the same type of infection
as last time - corynebacterium. While no infection is good and all are
scarey - we were able to treat through the infection at home. Unfortunately,
while they were at the office today, results came back eliminating that
infection. Instead, it appears to be acid fast bacilli or something similar
(in the TB family). Not good news - but still hope.
At the current time, the doctor has us on stand-by to go to the hospital.
Ryan received Vancomycin (strong antibiotic) intraveneously today and
our scheduled Cycle 9 of 15 that is set for tomorrow may be postponed.
We will start the morning a couple hours earlier than planned with more
Vancomycin - and go from there. For now, we will be tucked away in our
beds tonight - with thoughts and prayers that the infection is not serious
and Ryan's line will not have to be pulled - and hoping you all are joining
us in those thoughts and prayers.
We will keep you posted.
1 - April 30, 2004
o Landmark - We are half way through!!!!
After the inital induction phase of 30 days, Ryan's treatment plan calls
for 15 cycles in the maintenance phase. We are officially half way through
the maintenance phase! There is a light at the end of the tunnel.
o Cycle 6 and 7 are under our belt!
Well - my predictions (and deep dreams & desires) did not come true
that it would be smooth sailing once we started with the new drugs on
Cycle 6. Not yet - anyway. I'm still optimistic that these drugs won't
be as harsh on his little body.
o Week long hospital stay
after Cycle 6 was as a result of a bacterial infection that we are currently
Ryan developed a bacterial infection called corynebacterium. An infection
that according to the docs is not seen too often. It is a bacteria that
lives on the skin and the GI tract and doesn't bother those of us with
healthy immune systems. Fortunately, we were able to try to treat it with
hefty antibiotic infusions and we are almost in the clear!
o Fun and Laughter: Circus, Papa & Ben
How can you go wrong with that trifecta?
Is another month already over? I have found myself over the last month
needing to re-educate myself about the disease - I go through waves of
panic, reflection, curiosity and normality. As I sit here - with Evan
by my side in the exersaucer (thoroughly entertained by Baby Mozart) and
the big boys (Greg and Ryan) peacefully sleep upstairs, I feel like a
tremendously lucky person. Ryan is half way through treatment and he's
April 1, 2004:
Round 6 of 15. Ryan had the new regimen of chemo. The Adriamycin is gone
- forever - halleluja. Vincristine was replaced with Velban and the steroids
and 6 MP started as usual for 5 days. An IGG transfusion was also done
to replenish his immunogammaglobulins.
Ryan handled treatment well and his counts were at 2000 so it was off
to the circus we went. I think it's more fun to watch a kid at his first
circus than to be the kid. Ryan's eyes were like saucers watching the
kooky clowns and dressed up elephants. We sat with a group of children
who all had cancer. Quite a distinguished - and brave - group. I was thinking
that any of them would be capable of walking that tight rope.
April 2 to April 10, 2004:
Ryan's counts starting going down as well as his hemoglobin (red blood
cell) level. The red blood cells are directly related to his energy level.
His counts were at 1000 on Wednesday April 7, 2004 when he and Greg were
at his appointment. He received his first dose of Velban which is a chemotherapy
he receives on week 2 and week 3 during the cycle.
Once home, Ryan developed a fever of 101.6 (100.5 is the trigger for chemotherapy
patients). He reported to the doctor's office again to get an infusion
of Rocephin (an antibiotic) and to give a blood sample to try to grow
By Friday April 9, the cultures had grown to show that it was positive
for a gram rod positive infection. More blood was taken to try to grow
again to determine if the first results were accurate. Ryan's counts had
gone down to 600 but he was motoring around like he was fine.
We colored eggs and prepared for the Easter bunny. Ryan wanted to catch
him in the act so when he awoke on Sunday morning, he creeped around the
house checking in every nook and cranny - thrilled to find a hidden egg
but disappointed that the bunny must have narrowly escaped his detection!
April 11 to 17, 2004:
It was Easter morning that we got a call from the doc telling us that
Ryan's cultures grew again and that he needed to report to the hospital.
His counts were as low as they go - by Monday they were in the 100s and
bounced up and down from there over the entire week. We were cut loose
late on Thursday with counts at 238.
All infections are taken very seriously. They are the wild card - they
obviously happen regularly with those with low immune systems but its
a dangerous place to be. Some infections are more serious than others.
At first, they thought it was an infection called acid fast bacilli that
would require removal of the central line. Something I dread - for Ryan,
it could mean 10 steps back - or worse. Ryan is finally comfortable with
his treatment. To remove the line means 2 surgeries - one to remove it
and one to put another one in. It also means putting an IV into his arm
- nightmare - With an IV, he feels all of the medicine going through his
little veins. The pokie is a disaster and often requires several attempts
to successfully get the needle into one of those veins. As bad as the
removal of the line would be - it would be worth it and we'd get through
that part of it - so long as we can rid him of the infection. The infection
is the true evil.
It turned out the infection is one called corynebacterium which was not
determined until Wednesday after consultations with the infectious disease
specialist. It is a bacteria that lives on the skin (and also the GI tract)
and a low immune system is its target. As you all know, we are very careful
about exposure for Ryan. You can't help second guessing some of your decisions
- wondering if you could have prevented it. One less social interaction.
We have been assured that no matter how careful you are - it can happen.
There is no way to prevent it all - unless you live in a bubble. That's
not an option.
The infection was in the central line and in his body. The central line
is a very happy place to grow bacteria because there is a fine layer of
blood stuck to the sides of the tube - and that provides a great environment
for bacteria to grow. To rid him of the infection short of removing the
central line, Ryan was put on fairly intensive antibiotics of Vancomycin
We skipped the scheduled chemo of Velban for the week because his counts
were too low. While there, Ryan also had a red blood cell transfusion
and neupogen shots. Neupogen stimulates growth of white blood cells. We
had to learn how to give the shot to Ryan because if we wanted to get
out of the hospital, we needed to know how to give Ryan the injection.
Greg and I practiced giving shots to each other - much to Ryan's delight.
Greg told Ryan a long time ago that he laughs in the face of pokies -
without batting an eyelash - he made good on that claim and laughed with
wild abandon (or pain - I'm not sure which) when I stuck him with the
needle! For me, Ryan marched right over to me and grabbed one hand in
each of his. He promised me it wouldn't hurt too bad and convinced me
I was brave.
As usual, the support system kicked into high gear when Ryan was admitted
to the hospital. Barb and Mark delivered dinner EVERY night except one
that Michael and Laura wrestled away from them! Ryan had a fun visit from
Lou Brooks - he made a fabulous playmate - bringing two light sabers to
do battle with Ryan. Of course he was no match for the master Jedi, Ryan
April 18 to 23, 2004:
Home at last!
We were released from the hospital on an intensive schedule of infusions
of Vancomycin. Greg and I have felt like nurses who work around the clock
- the day and night shift. It was kicking our . . . But well worth it
to be at home.
Ry somehow decided that he likes Pokeman. How he ever got exposed to it,
I have no idea. I'm not a fan - to say the least - but it has become his
recent obsession. Thank goodness for e-bay - Greg found 180 small Pokeman
figures for 40 bucks. It has been great for the incentive program. The
only problem is that Ryan knows how to manipulate and out-smart us. Since
they are really small, he convinced us one time that he didn't have to
do as much for a small present. We bought it one time and that's all it
took. Now he will brush his teeth 5 times a day and beg to take his medicines
even ahead of schedule - all for one little Pokeman. There are worse things
in life, huh? The trick is to tell him that only nice boys (ones that
don't whine and don't expect presents like Veruca Salt on Willy Wonka
and The Chocolate Factory) get presents. I told him if he constantly talks
about them, he won't get them. Immediately after that talk, he would do
something required of him and then tell me that he wasn't talking about
getting a Pokeman. Always trying to skirt the rules, he is.
Round 7 of 15 - On Thursday, April 22nd, Ryan completed
the 7th of 15 rounds of chemotherapy. Unbelievable - half way through.
His counts were okay at 1200. All in all, Ryan tolerated it well.
April 24, 2004:
A big event day for us. The Socha twins were baptized - Evan and I were
able to attend the church service. Afterwards, we stopped by a memorial
at Robinson Secondary School to see a memorial dedicated to my dad. The
Sochas then had a party and Ryan and Greg met us for the last half of
it. Ryan was playful and kept up with Benjamin - which is no small feat.
We left in time to do Ryan's mid-day infusion of Vancomycin.
That evening, we trespassed upon more time of Oma and Papa (Ryan and Evan's
grandparents). They watched the two boys while we attended a party given
by Barb and Mark for our friends Kris and Karl that were visiting from
Chicago. It's kind of surreal to be at a party with adults! Two incredible
people were there - both survivors of cancer. I left in complete awe of
them - and they don't even know it. Their stories were unique and equally
heralding. We got home just in time to do Ryan's nighttime infusion of
April 25 to 30, 2004:
The week was fairly low key. Ryan's counts were headed south and we were
still not in the clear with the infection. The infusions of Vancomycin
continued throughout the week. They are scheduled to end May 2nd. Ryan
got the Velban as scheduled on the 28th. He tolerated it well. This week
was very good for Ryan. But for no hair on his head, you would never know
he was sick.
Jen Tegan finished the Team in Training Race! For those of you who have
been following Jen's adventure to run a 1/2 marathon to benefit Leukemia
and Lymphoma research, you can breath easy - she made it! Of course I
had no doubts. But the weather was apparently uncooperative. She and her
teammates were out in the cold rain for 1 1/2 hours before the start -
it was delayed due to the weather. Perhaps a bit anti-climatic, but she
should be swollen with pride for the incredible thing she has done for
so many. She has already signed up to run a FULL marathon in October.
Coincidentally, Ryan's treatment should be ending sometime in October.
His race will end when hers does. We were told by Bert and Kim (Ethan's
parents) that treatment is like a marathon and not a sprint - so true
- pacing ourselves is essential to crossing the finish line. Jen will
have to picture us when she crosses that line because we will be stepping
across with her.
A look at the near future:
Ryan is scheduled for one complete cycle in May which starts on the 12th.
The other weeks will be just Velban. With the weather improving, our spirits
are following suit. Greg and Ryan are planning to have a camp-out in a
tent in our backyard during May. Hopefully the cicadas won't swarm the
tent - such nasty critters. For me, I will be tucked away in my bed -
smiling at the thought of the two of them in sleeping bags in the backyard.
Calling in recipes - I wouldn't mind if all of you -
the masses - that made food would e-mail me the recipe(s). I want to make
a book. I think that would be cool.
I wish all of you good health and happiness over May. I will update after
Ryan's next cycle - towards the end of the month - unless there is something
unexpected that comes up. Here's to hoping for the expected.
With warm regards,
April 16th Update...
HOME from the Hospital!!
came home on Thursday night (4/15) after a 4 day stay in the hospital.
be on antibiotics for another 2-3 weeks which have to be administered
intraveneously three times per day for about 2 hours each time (not fun
but better than the surgery alternative).
The infection, which was determined to be within his tubie, was able to
be treated without removing the tubie (a surgical procedure). A HUGE
relief for everyone!! Ryan is in very good spirits and everyone is THRILLED
to be back home.
April 12th Update...
IS IN THE HOSPITAL...
Ryan is in the hospital
(Fairfax INOVA) due to an infection.
He was admitted on Sunday April 11.
THE DETAILS... (written third party from a quick
On Wednesday April 7, after his scheduled visit/chemo treatment at the
doctor's office, Ryan developed a fever. Per the doctor's orders, Greg
took Ryan back in so that they could take a blood sample to determine
what was causing the fever. They received preliminary results on Fri.
morning (after the sample had cultured for approx. two days). It was positive
for an infection. Ryan's fever though had subsided by then.
They went back in on Friday to take more blood though for another (more
extensive) test. They received the results from that test on Sunday and
it was again positive. Ryan was admitted to the hospital for treatment,
observation and further testing on Sunday.
hours at the hospital Ryan developed a fever of 101. The fever goes up
and down. They administered Tylenol but it wasn’t lowering the temp.
quickly (which is suspicious). They've been taking his temperature throughout
the night every 20 minutes since he was admitted.
they are administering two general antibiotics to potentially fight off
the most common infections, which he may have. He's developed a rash on
his head from antibiotics.
In the hospital
they have taken addt'l blood samples from his "tubbie" and from
his hand. Both cultures are growing unusually slow in lab. This is not
normal and so, today, an infectious disease specialist is getting involved.
Ryan is also
now extremely nutropenic. His counts are at 0! (Friday it was 600, Sunday
400, and now 0 today). He was also given a blood transfusion Sun. night
because his hemoglobin was dropping quickly. He's in better spirits after
the transfusion. Just very tired and sleepy now.
the doctors are trying to determine what type of infection it is and where
the infection is (it might be in his tube or it might be more systemic).
If it's in the tube, he'll need surgery to remove the infected tube. Not
what anyone wants, especially when his counts are at 0.
be in the hospital at least until Wednesday. It could be another week,
maybe 2 weeks depending on the outcome of the tests and the doctor's conclusions.
the next test results back Tues./Wed and a second set on TH/FRI.
hope…they find out exactly what it is, it's non-tube related,
treatable with IV medicine, and they'll be out by this Wednesday (April
14) since they can do the IV drug treatments at home. The less time in
the hospital the better (especially when his counts are so low and his
exposure to "sick people" needs to be minimized).
fear…it’s in the tube and the tube has to come out
(surgery). It'll be an addt’l 10 days to 2 weeks or so in the hospital.
back here for more updates and ways, if any, you can assist. Say a prayer
and keep little Ryan and his family in your thoughts.
as always, you can send them a message by e-mail at email@example.com
13, 2004 to March 30, 2004:
o Jennifer Tegan single-handedly raised nearly $11,000.00 for
the fundraiser benefitting the Leukemia / Lymphoma Society.
Jen will be running the half-marathon on April 24 and has raised a phenomenal
amount of money to aid in the fight against cancer.
o Ryan's counts have done the usual up and down for the cycle.
Never reaching the depths of the lows as in the past, Ryan's counts did
dip down in the middle of the cycle as expected. His energy went down
but he was never down and out. Lots of playing and learning and having
fun during this cycle. Your prayers and good wishes are working!
o Cycle 6 of 15 will be this coming week.
The first cycle with the change in drugs. We're anxiously anticipating
good reactions and results from the new regimen.
With the usual cute spirit, Ryan is holding up tremendously. The doctors
have revealed to me that they had their doubts at first because his initial
adjustment was poor. You're 3 - you have a few surgeries, lots of meds,
even more "pokies" and you've never had so much as an ear infection
before in your life - go figure. Anyway, the battle mentally has made
a marked turn-around and he has been winning that one.
When he was first diagnosed, he was given a doll at the hospital - one
that wears a hospital gown. It is a tool that they use for the kids to
explain what's happening to them. The day he had his surgery to get the
central line put in, they used one of the dolls to explain the procedure
so Ryan wouldn't wake up freaked out with this thing hanging out of his
chest. They gave Ryan a magic marker to make the doll's face. He was able
to draw the mouth which has a crooked turned up smile - coincidentally
resembling his mixed emotions at the time. They then use the real tubes
and dressing that was going to be on him and attach it to the doll (on
the outside - no cutting involved). By the way, he named the doll "Bongu."
Anyway, last week I went into his room where he was and found him talking
to the doll. I noticed that the "tubie" had been taken off the
chest of the doll. I asked him about that and he said, "Bongu doesn't
have anymore bad guys in him so he doesn't need a tubie." I wonder
what goes on in his little head about his tubie. We will certainly have
to celebrate the demise of the bad guys when his tubie comes out next
Fall / Winter.
Ryan is in tune with his treatment. Now that we're into this stuff, I
think it really has helped him adjust. He will refer to times as before
and after the time he got his tubie, like "remember that time we
went to the beach - that was before I had my tubie." While he has
had the congested cough, I once said something like - "you need to
get that frog out of your throat." That startled him at first - what
in the world was a frog doing in his throat. He then took to thinking
about the frog in his throat and when it got better but not gone, he would
explain that just pieces of the frog were left - like his legs. At the
doctor's office, he will explain that he still has a little bit of the
frog left in his throat - and told Dr. Horn that the frog's head was still
in there but the rest of him was gone.
Dr. Horn and Ryan have a great relationship. She is a
tremendous doctor - and tough as nails. She has an intimidating personality
but not to a brave 3 year old. He expects her to talk about ninja turtles
and power rangers like the best of them. And Dr. Horn complies. She usually
finds some of Ryan's favorite super heroes inside his ears when she examines
him. They do not have a relationship which depends on me or Ryan's dad
- which is not the case with most medical people. They talk together and
care about each other. And I think she is constantly amazed by him.
day recently when I was talking to Dr. Horn, Ryan asked for his apple
juice. I told him where it was and told him I was proud of him for drinking
(fluids are very important and part of the recipe to avoid the horrendous
constipation experience we had in the past). I said to him, "good
job, Ryan - you know what that means." And he responded delightfully,
"Yep, it means poops!" Dr. Horn nearly fell off her chair. She
adopted it as the quote of the week. She had never seen parents teach
their young child so much about treatment and felt that it was instrumental
in Ryan's improved adjustment to treatment. Whenever Ryan is reluctant
to take his medicine, we discuss Dr. Horn and how proud she will be to
hear of his cooperation.
I often wish I could jump inside of my 3 year old's head. I recognize
how fortunate I am to be able to spend so much quality time with Ryan
- don't get me wrong - I'd prefer that I spent less time with him because
that would mean he never had cancer, but I am so lucky to share so much
with him as of late. As a result of the time I am with him, I get to occasionally
hear the things floating around in his head. As we were driving the other
day, Ryan was staring at the trees and noticed that they had no leaves
on them. He asked me about where the leaves went. I told him they go away
in the winter and then they come back when it gets warmer. He pondered
this for a moment and then said, "but they don't know where they
belong." meaning that the same leaves that were there will come back
but not know which branch on which tree they belong to. The wheels are
One of Ryan's favorite thing these days is to get into a "did too",
"did not" war and end it by declaring, "Infinity."
I like envisioning him standing there for infinity!
March 13 to March 20, 2004:
Ryan hung in there pretty well after his last big chemo round. Visits
with his beloved Papa made all his pains go away. Even though he was fighting
the Hulk (steroids), he managed to have visits from his friends Benjamin
and Riley. I'm always a little worried that even when Ryan is feeling
healthy enough and so are his friends that Ry will scare them off with
his temper while he is on steroids. I need to have a little more faith
- 3 & 4 year olds are much more forgiving then us adults - So many
lessons we can learn from these little guys.
As for treatment, Ryan got a pentamidine infusion which helps to prevent
a particular type of pneumonia that attacks those with low immune systems.
It's funny how the frog in his throat disappears after he gets this infusion.
March 21 to March 26, 2004:
This week boasts a new landmark in our life since cancer entered the picture.
I attended part of our work conference. The Commonwealth's Attorneys all
gather in Williamsburg for a few days for some classes (and relaxation).
Certainly at the end of last year, I could never have dreamed I would
make it there.
Fortunately, Chris and Angie (Greg's brother and his wife) visited from
Sunday to Tuesday. I got to spend some quality time with them on Sunday
and then made my way down to Williamsburg, arriving at 1:00 a.m. I stayed
until Tuesday morning. It definitely provided me peace of mind knowing
that Chris and Angie were helping out and hanging out with Ryan. I know
he kept them busy - teaching them new games on the x-box.
Ryan's counts dipped to their lowest but I take great comfort in knowing
that he has finished some of the harshest drugs during this treatment.
Overall, his little body has learned to cope better with the drugs and
the mouth sores have stayed at bay. Most of the credit goes to him adjusting
with his diet and a few maintenance drugs.
March 27 to March 30, 2004:
The weekend was great for Ryan. The weather cooperated and he played to
his heart's content. He has had great energy for several hours and then
re-energizes with a 3 or 4 hour nap. During those playful times, he chased
play cars outside with Ben, he saw orangutans and crocodiles at the zoo,
and he chased Papa up and down the stairs. Life doesn't getter better
Random acts of kindness:
So many of you have been moved by Ryan to do something to help - to make
a difference for Ryan. Sometimes that takes the form of running a race
for leukemia and lymphoma society like Jen Tegan. As I noted at the beginning
of this entry, she raised an amazing $11,000 which will go to the society
to fund research for better treatments and a cure. She could not have
done it but for the efforts of many - and especially one: my dear friend
(and surrogate sister) Margaret wrote letters to many of her friends in
an effort to contribute to Jen's goal. A chunk of the $11,000 came from
the generosity of Margaret's friends. So amazing.
While at the doctor's office, I bumped into Margy (the play lady at Ryan's
doctor's office). I learned that an old friend of mine from high school,
Betsy (Plisner) McArdle was coming to the office to donate craft supplies
- like crayons and paper. It was the next visit that Ryan and I got to
use some of those new supplies. It was so cool to look at the other kids
playing with the same supplies and knowing that the crayons they had in
their hands had just been in the box delivered by Betsy. Every day I count
my blessings - which often is directly related to the number of people
I have been fortunate enough to call friends.
Ryan will be undergoing Cycle 6 of 15 on Thursday. He is also scheduled
for an IGG transfusion. The drugs are changing this cycle and are scheduled
to be the same regimen throughout the rest of his cycles. I am so hoping
that my predictions are right and that he handles these drugs even better
than the others. Do I dare wish it?
If all goes well, we will go to the Circus after chemotherapy! Growing
Hope, the foundation created by Ryan's doctor's office, has purchased
tickets for every kid in treatment and all their families. For many of
these kids, it is one of the only social events they will go to all year.
You can never imagine how much these kids appreciate these fun events
- you can feel their excitement in the way they carry themselves. Every
clown is hilarious and the cotton candy never tasted so good.
With warm regards,
1, 2004 to March 12, 2004:
o Silent Auction - big success!
Jennifer Tegan with friends and family held a silent auction to benefit
the Leukemia and Lymphoma Society on March 7, 2004. Lots of great things
were auctioned off and great funds were raised to help find a cure for
leukemia and lymphoma.
o Week leading up to Round 5 was fantastic!
Ryan's chemo cycle began on March 11. The week prior to that was like
having Ryan without cancer in the household. His counts dipped but certainly
not as low as some of the previous rounds. The transfusions he got near
the time of his last cycle certainly boosted his counts for this whole
cycle. So devine!
o Echocardiagram showed decline in heart functioning
Ryan had his echocardiagram on March 4, 2004. His heart is still functioning
in normal range, but Adriamycin has taken a toll (as expected).
o Round 5 of 15 is FINALLY done!!
Although the chemo is still being administered at home and many of the
effects of the drugs are yet to come, we made it through the last of the
March 1 thru March 5, 2004:
I eased back into work this week. It felt great to be back. It was also
a true blessing that I am going back slowly. It's reassuring to know that
I have time to take care of things at home (whether that's going to doctor's
appointments or calling insurance or doing the laundry!) and still have
lots of play time with Ryan. To go cold turkey would be very difficult
and daunting. I am also without a sitter this month - thus far Oma (Greg's
mom) has taken over the Lion's share. However, she will be working, too
- which means I need to be home with Evan on some of the days.
I have to take a moment to talk about Oma. She has become the bedrock
of our support. I have no worries with my infant because she has taken
on so much with him. My mind would be cluttered with worry about how to
take care of both while Ryan is in need of full-time attention. By providing
so much love and care for Evan, I am worry-free. Occasionally, I feel
like the babysitter - but hey, what mother of an infant could complain
about that!! You can already tell that Evan loves her - he beams at her.
Everyone needs a good mom to survive childhood cancer!
Echocardiogram: Ryan had an echo on March 4, 2004. The results were disappointing
but expected. They measure the heart's performance in percentages. He
started out in the 40s. It has dropped to the 30s. The good news is that
his heart is still functioning in the normal range. It is not alarming
enough to discontinue Adriamycin which will only be given to him ONE LAST
TIME on March 11.
Evan had his 8 week appointment on Friday March 5, 2004. He is already
threatening to catch up to his brother in weight!! He was an astonishing
14 lb, 13 oz.!!!! He is in the 97th percentile in weight and the 90th
percentile in height. By all accounts, he looks like a 6 month old. Ryan
is just waiting for him to be able to hold himself in the sitting position
before he expects to fit him with a light saber!
A highlight of the week was joining up with one of Oma's neighbors and
her son - about Ryan's age. They chased a ball, jumped in a sand pit,
climbed up ladders, and slid down a slide! Incredible to be enjoying him
as a 3 year old! Life is great.
Weekend of March 6, 2004:
Ryan's counts at his appointment during the week showed that he was neutropenic
but that the numbers were going up. They were high enough to suggest that
he would not be neutropenic over the weekend.
You all know the weather as of late. Ryan has enjoyed it nearly as much
as I!! Saturday was no exception. We even went to a bagel place - the
FIRST time since Ryan's diagnosis that he went to a public restaurant.
Of course, he never went inside - he played outside where there is a courtyard
and tables. And his friend Ben and their family joined us. Ryan ran around
and met up with two big boys (probably about 7) that he and Ben chased
Sunday was the silent auction. Again, a monumental event. Greg and I out
without Ryan!! It's hard to say who had more fun. Ryan was playing with
his beloved Papa.
Auctioned off were great items like coffee and bread baskets and spa gift
certificates. A hot item was a Tiki Barber signed and framed photograph.
It was pretty amazing to see people contributing to such a great cause
- and it was nice to be thinking about others for a change. There are
some honorary teammates like Ryan that are not doing as well as he is
and losing their battle against cancer - which provides even more fuel
for us to fight the battle against this devastating disease.
March 8 - 10, 2004:
One great day after the next. I am so thankful for these few days. I worked
without any worry about home. Ryan was pleasant and energetic - so much
March 11, 2004:
Ryan handled treatment fairly well. The usual frustration with us started
the day because he is not permitted to eat or drink. It's funny because
ordinarily he is totally disinterested in either and I have to provide
incentives to get him to eat and drink!! It's only when he can't have
it that he really wants it - typical, huh?
The day had its ups and downs. I started off with frayed nerves. I have
mentioned several times that this was the last cycle with Adriamycin,
Spinal Tap with Methatrexate injected into the spinal fluid, and Vincristine.
For the future rounds, he will be getting Methatrexate in his central
line instead of injected into his spinal fluid and Vincristine will change
to Velban on a weekly basis. Adriamycin is eliminated completely. He will
continue to get 6-MP and Solu-medrol (steroid).
Adriamycin is the one that knocks basically all of his counts down - the
white blood cells, red blood cells, platelets. His ability to fight infections
is seriously compromised. It also causes mouth sores. And worst of all
- it is the drug that affects his heart. Counts will go down with Methatrexate
given systemically in the central line and could cause mouth sores but
not expected to be nearly as harsh as Adriamycin.
Vincristine is the culprit for causing muscle weakness, joint pains and
constipation. Velban may have similar side effects but they are not seen
as greatly as with Vincristine.
Chemotherapy in general causes nausea and vomiting and increased by the
effects of anesthesia. Anesthesia ends with the last spinal tap.
The round was not something to look forward to, but a necessary evil in
the fight against the ultimate enemy: cancer.
Ryan woke up from anesthesia completely out of sorts. It was basically
his consistent state all day and night. The littlest thing made him break
out into tears. He also had some Class A fits. The saddest part is the
frustration I felt at his behavior - I tried so hard to remind myself
that the drugs were really altering his behavior but felt myself getting
irritated with him. Now is not the time to teach a lot of lessons but
I had to instill some rules occasionally. His apologies were so tender
and sweet - I felt laden with guilt. I guess this stuff not affects him
but all of us around him.
Even so, Ryan showed his amazing strength. He would rise out of the depths
of despair in order to jump off the couch with the black Dino Thunder
power ranger. He would come and whisper in my ear about how one kind of
power ranger was attacking another kind - almost making me believe there
was a real war going on upstairs in the living room between the various
Ryan's counts were excellent to start off this round. We administer the
steroids and the one type of chemo, 6-MP for the next 5 days from home.
His counts do not generally dip down for a week which means we should
be safe to play with some friends over the weekend. The steroids are the
only wild card for this weekend. Ya never know when the Hulk might make
an appearance. Adults can, of course, overlook this behavior. I am always
a little scared to expose him to other kids because they might not get
it. It's fascinating because he can go for hours and be pleasant as can
be and then all of the sudden, "I SAID - I NEED APPLE JUICE!"
as if he was stranded in the desert with nothing to drink and his mom
is slurping down a tall glass of juice on ice without offering him any.
If Ryan's counts go too low this round, we have set up our Designated
Donor list. If ever your faith in humanity is ever waning, please think
of these people who have volunteered to give their blood - not to mention
the time and energy required to do it - all for a little guy named Ryan.
Thanks for all the fabulous support -
23, 2004 to February 29, 2004:
o Hope GrowsWe got
an encouraging report from the doctor this week! In an effort to gage
where we were in treatment, I requested a meeting with the lead doctor
in Ryan's treatment. She said Ryan was responding "phenomenally well"
o "Growing Hope"
A foundation designed to fill the void in the lives of kids with cancer.
It was set up by the doctors and one amazing woman, Margy, who works at
Ryan's doctor's office. It organizes events like a Christmas party, a
summer picnic party, day at Kings Dominion and a trip to the Circus for
those kids currently in treatment. No one who helps with the events gets
paid a dime. Every penny goes into buying presents for the kids, paying
for tickets to Kings Dominion and the circus, etc. It provides ways to
give these kids an outlet to be kids like those without cancer. The foundation
only funds the kids in treatment with Northern Virginia Hematology &
Oncology. It is not regional or national - just local. The foundation
also provides educational support (provides families with books about
cancer and survivorship) and financial support - including helping those
financially in dire straits to pay their rent, pay for car repairs or
o Higher Counts
The red blood cell transfusion and the IGG (antibodies) transfusion that
Ryan got right around the time of his last chemotherapy round boosted
Ryan's counts and energy so the lows were not so low. A private birthday
party for Ben topped the charts.
We've captured some good moments Ryan has had and hope you enjoy them!
TOUCH HERE FOR PICTURES
Monday February 23, 2004:
Although the overall grade for the week was an "A", Monday started
off slow. Ryan was sluggish - up at 8 and back down at noon for several
hours. It was a computer day - playing Lilo and Stitch games on DisneyChannel.com.
Lilo is a little girl whose only real friend is an alien "dog"
named Stitch - she apparently lost her parents when she was very young
and her sister is doing her best to keep Lilo out of trouble - unsuccessfully,
I might add. I remember when Ryan first saw the movie in our first hospital
stay - I think he related to some of her emotions and realized he was
allowed to express them to help him through the confusing time. All legitimate
feelings, of course.
Tuesday February 24, 2004:
We are on top of the world! Ryan's energy picked up - and my spirits matched.
Ryan's counts were unusually high - attributable mainly to the red blood
cell transfusion and IGG transfusion - but I'll take it: no mouth sores
and only minimal leg and joint pain. I scheduled time with the doctor
to gage Ryan's progress. She was encouraged by Ryan's response to treatment
and gave us as high as a 70% chance of survival - much improved from the
50-60% we were originally given. We even looked ahead to the end of treatment
in October - of course, I forced the issue because I wanted to plan a
vacation after treatment was over! But it was fun to think about that
day when treatment ends!
Wednesday February 25, 2004:
We had a chance to visit with Benjamin and family - the safest time since
we learned of high counts yesterday and counts are not expected to take
their big dip for a few days. Still no crowds, of course - just accepting
healthy visitors here.
Team in Training note...
I just understood that Jen was organizing a fundraiser on her own to raise
money for her goal for the Team in Training race. She had mentioned once
to me that she was doing a Silent Auction but I never got much info -
I figured it to be a function put on by the Leukemia & Lymphoma Society.
No, no - it's just Jen and another friend putting together an event to
raise money. She has gotten contributions from about 15 businesses for
the silent auction.
It will be held on March 7, 2004 at 7:30 p.m. at the South Riding Inn
(restaurant & bar located in South Riding - a community in Loudoun
Co. - take 50 west from Fairfax). Anyone and everyone are welcome. I will
be there and Greg will be coming with me so long as Ryan is doing okay.
more information about the event contact Jen Tegan at... firstname.lastname@example.org
Thursday February 26, 2004:
Ry-Guy strikes again: He loves to incorporate big words into his everyday
sentences - a sign that he is hanging around us older people a lot! Of
course, the word often is not used the way we ususually use it, but I
can get the jist. At one point, I had asked him to clean up toys - and
in only the long, drawn-out way I can do it - I explain why he needs to
pick them up - won't lose stuff; won't step on stuff and hurt toes; etc.
-- to which he yells very sternly, "Mom, you are complicated to me!"
- trying to express the thought that I make everything more difficult
Friday February 27, 2004:
How gorgeous has the weather been? If only it would last . . . In the
meantime, we tried to take advantage. Ryan played outside - we even called
a friend and neighbor who met us outside with her little daughter, Amy.
So nice for Ryan. I labored over a chalk drawing of a power ranger while
Ryan ran circles around me. The fresh air was amazing. If you didn't know
better, you would never know Ryan had cancer. I find myself staring at
his hands, his feet, his whole body when he's running around - thinking
how amazing he is considering all he has been through.
The evening was great for Ryan, too. My friend, Michelle, stopped by and
got a quick lesson in Ninja Turtles. Papa arrived and Ryan's world became
complete! You have to experience it to truly understand the relationship.
Papa is a quiet, gentle man. Ryan is a precocious 3 year old. Here's a
typical playdate: Ryan lights up when Papa arrives. Papa gets his trusty
diet Pepsi and begins the games. They literally grab light sabers and
hit them (stick to stick only - no touching other people). They then run
up to his bedroom and attack all the stuffed animals - one by one. They
then run downstairs to examine the power rangers toychest - picking various
ones out to start a make believe game with them. At some point, they find
themselves in front of the computer - Ryan resting his head on Papa's
chest and Papa hitting the keys to beat the villian of Samarai Jack or
chasing experiment pods with Lilo and Stitch. Ryan invariably falls asleep
at this point. Papa also helps in the never ending battle to get Ryan
to eat. While they are playing, Papa makes pit stops to "get energy"
(put food or drink in Ryan's mouth). Occasionally stopping for a burping
fest (boys will be boys)! And then they start all over again! There's
nothing like it!
Saturday February 28, 2004:
Ben's birthday. I could probably include pages and pages about the contributions
the Sochas make to our lives. Literally. Michael set up this website and
updated it the first few months. They both organized the cleaning and
re-organizing of our house when we were at the hospital for the first
month. They cleaned and re-organized. They make us dinner - EVERY Friday
night - and then some. Michael puts my updates on the website. Laura thinks
of special ways to make Ryan feel special - including making him a Santa
cake for Christmas. Keep in mind: Laura gave birth to twins about a week
before Ryan was diagnosed with cancer. They visit us every week with Ryan's
buddy, Ben, - so long as everyone is healthy. They continue to think of
ways to help us - requesting help for us when it snows or getting information
to post on the website about donating blood. The list never ends.
Ben's birthday was no different. He turned 4 on Saturday the 28th. Laura
had 2 parties - one on Saturday with just us and family. In addition to
the grandparents and 1 greatgrandparent, there were Ben's Aunt Jenna and
Uncle Matthew. And then us. (The
following day - Sunday - they threw a whole other party for Ben's other
friends - about 15 young kids.) On Saturday, at the private
party, Ryan had a blast. He helped Ben open his presents and shared Ben's
new toys - Ben was being the amazing Ben as usual - letting Ryan play
with anything and everything. Together they blew out Ben's candles on
his Power Ranger cake and drank as much juice as they wanted. At one point,
Ryan was a little concerned that no other kids were coming until I told
him that Jenna and Matthew were on their way. Ryan considers them to be
playmates, of course! Jenna is 16 and Matthew is mid-20s. It's all relative,
huh? He was smitten with Jenna. And Jenna was so sweet with him.
It brings me to a thought about kids with cancer: their world is so sheltered
- it's really the only thing a parent can do to help fight the battle
against cancer to try not to lose the kid to some sort of infection -
and even the most vigilant have failed. The isolation takes it's toll,
however. It's something that probably affects older kids even more. Think
about it: no birthday parties with lots of kids, no soccer or football,
no boy/girl scouts, no school. Their world becomes the cancer world. At
Ryan's doctor's office, they strive to fill that void for the kids. The
program is pretty amazing - "Growing Hope".
"Growing Hope" Margy's full-time job is to
provide a positive atmosphere for kids at the office. She has set up a
play area where she sits basically all day doing crafts for the day -
she ususally has a few so they can be age appropriate - unless she's running
around trying to find a requested video like Scooby Doo for a kid who
is undergoing a tranfusion or she's encouraging a kid to walk down the
hall so the doctor's can examine his/her muscle strength. She has a gift
- no doubt. She incorporates into her full-time job duties the role of
organizing and implementing the activities funded by "Growing Hope."
The other members on the board volunteer any of their time needed to help
out. That means 100% of the money in the foundation goes into making the
lives of these kids better. The doctor who founded the practice donated
his own money to pay for the supplies (crayons, etc) used at the office.
I never dreamed such a foundation would exist that did not have some overhead.
They do a few fundraisers to keep the foundation funded. They do not strive
to do too many because they do not want to make too much money. They want
all money that comes in to go out. They are not a money making foundation.
If you are interested in contributing, let me make some suggestions. Donate
old and new toys, books, televisions with VCRs, videos, craft supplies
and anything else that your imagination may come up with. But before doing
so, Margy should be consulted. Space is limited in their office and they
may not be able to put your contribution to good use. And I would certainly
not want to scare you off from participating in a fundraiser even though
big cash is not the goal of the foundation.
One of the greatest contributions I can make to fight the cancer battle
for kids is to disseminate information for those of you who want to help
but do not know how. Michael suggested many ways on our website which
have helped us tremendously. I now have the opportunity to provide ways
to help others not as fortunate as us.
You can contact Margy and the foundation for Growing Hope by e-mail at
Sunday February 29, 2004:
And another month ends. Unfortunately, Ryan got sick in the morning -
hopefully not a sign that we overdid it. The rest of the day he felt fine
- it's hard not to be paranoid, though. But the day did end with a bang
- Papa came by to visit. Life doesn't get much better than that!
More beautiful weather and outdoor play.
I'm back to work on a limited schedule.
One scheduled appointment for Ryan on Wednesday and an echocardiogram
Chemotherapy Round 5 of 15 during the 2nd week of March - which marks
a milestone - the LAST Adriamycin and the LAST spinal tap and the SWITCH
from Vincristine to Velban and ONE-THIRD of the way through treatment.
Please make an effort to spend quality time with your family - don't let
the time escape you - let dinner start a half hour later so you can play
or talk to your family.
Lori and family
16, 2004 to February 22, 2004:
o Finished Chemotherapy Round 4 of 15.
Ryan started this round off with good counts which allowed Ryan
to have a break from some of the early ugly side effects. His energy is
low but no mouth sores or severe leg pain this weekend.
o Intraveneous is the way to go.
Steroids administration went absolutely smoothly and seamlessly. Halleluja!
o Nearing the end of Maternity / Family Leave.
I am heading back to work in March - and filled with mixed emotions of
anxiousness and excitement. My office is the most supportive and fabulous
- I am, nonetheless, tortured about missing out on time with Ryan and
not being intimately involved in his treatment.
February 16, 17, 18, 2004:
Over the first part of the week, Ryan's energy increased with each day.
His cough was still angry but his playfulness was near full swing. It's
strange but it is times like these that cancer is just a part of the day
- not consuming the day. We struggle with the normal 3 year old issues
- happily. Even the administration of the daily meds does not seem out
of place. What is normal, anyway? It's what you get used to.
Playdates with Papa topped the charts for the first half of the week.
Ryan never tires of Papa - and follows him EVERYWHERE (to include the
bathroom!). Although exhausted, Papa seems to be soaking up the attention.
February 19, 2004:
A long day at the doctor's office. Ryan underwent chemotherapy (round
4 of 15). In addition, he was due for the medication that prevents a type
of pneumonia that attacks those with critically low immune systems. And
last, his IGG level (antibodies) was low so we tagged on a 3 to 4 hour
IGG infusion to the end of the treatment.
Movies, movies, movies. Dora the Explorer was the favorite of the day.
The doctor's office has a healthy collection of movies for the young patients
and a few rooms with VCRs.
I had an opportunity to organize, make calls and schedule appointments.
Oggie and I have a system worked out - I do the logistical work (order
meds, make appointments for doctor's visits and scans, get food and drinks,
take notes about the treatment and exam and talk to doctors) while Greg
entertains Ryan. I'm not sure which is more demanding.
The challenges with a 3 year old differ from those with older children
in treatment. Ryan doesn't understand all the medical lingo - plus it
becomes stressful for him to hear it all swirling around him. He is also
too young to be left alone for any significant period of time. Having
the opportunity to split the obligations make treatment smoother for Ryan.
It is my firm belief that much of this battle requires a positive atmosphere
for Ryan. How fortunate we have been to be able to provide that. I think
about single parents with young children undergoing treatment. I ache
Ryan handled the drugs well - meaning, no reactions and minimal effects
of the chemotherapy. His white blood count on the day of chemo was much
higher than last round which bode well for the next few days.
February 20, 2004:
Ryan was in a good mood and medically able to visit with a few in the
My friend and "adopted" sister, Margaret, visited from New York.
What a treat. Let me brag about another one of my friends: When Margaret
read about Jen Tegan doing the Team-in-Training race, she undertook efforts
to raise money for the cause by mailing out a letter to 50 of her friends.
How incredible. I learned from Margaret this week that the early returns
on the letters look like she may help Jen double her goal. Blown away
- I am.
Another treat for the day: Ben and Ryan got to visit together. They had
a blast playing chase and power rangers. Ryan ended the day by sleeping
11 hours - worn out by playing with his best buddy.
February 21 and 22, 2004:
Ryan's energy depleted more and more each day. But, the really ugly side
effects were kept at bay - so overall, no complaints whatsoever.
He has bursts of energy - like when his Aunt Janelle visited him - followed
by naps that start earlier and last longer. He was generally cheerful
- and instead of running non-stop, he enjoyed being entertained from the
couch. This is often a very tender time because he wants to snuggle on
your lap. I find myself stroking his almost bald head and loving every
minute of it.
His appetite was not fierce, but adequate once we employed games and incentives
to get him to eat.
We are still administering the steroids until Tuesday. It has been an
absolute miracle to give them intraveneously. I can not begin to relate
the difference. I had been very anxious prior to the start of the chemotherapy
round when he had to have pills. We used to have to try to time it (4
times a day)so that he was alert and in a relatively good mood. We would
attempt to pump him up - which invariably failed. We often followed up
with promises and finally threats. He would have to willingly open his
mouth to allow me to shove my fingers down there - gagging him and usually
resulting in the pill floating in his mouth rather than making it down
the pipes. If it dissolved, we risked him tasting it and vomiting it.
A very stressful situation - and I handle a good bit of stress in my life.
Now - he can be unconscious when I administer it. Literally - I can give
it to him while he is asleep.
Back to Work:
I am starting back to work in March. I have been so fortunate to have
an office that has been incredibly supportive and afforded me the opportunity
to be with my family for these months. And there has been absolutely no
pressure by them for me to come back. I feel it is time. I have no intention
to over-do-it either. I am going to ease back into things beginning in
March. It will add a new dimension to this journey. One that will provide
a new type of comfort as well as an additional challenge.
In many ways, working will be beneficial for me. I love my job and there
is no better office in the entire state to do what I am doing. It will
give me an opportunity to briefly escape the world of cancer. Not true
Greg has been very lucky with his office as well. There was a leave bank
started for Greg that will allow him to draw off of leave of other Fairfax
County employees who have donated to his leave bank. Thus far other county
employees have donated enough leave so that he will be able to have paid
leave until May. So incredible.
It is obvious to those of you who read this site that one of us must be
with Ryan during his treatment. There has not been one week that we haven't
had some sort of surprise doctor's visit - often lasting the entire day
- in addition to the scheduled visits and scans for each week. Not to
mention surprise overnights at the hospital. And probably most important,
we must shield Ryan from germs while his immune system is low - a CRITICAL
component to beat cancer. Since Ryan is on my insurance, it took no deliberating
to determine who would commit to staying home during the full course of
treatment. However, Greg is mindful of the generosity of his co-workers
and recognizes that the office is put under considerably more stress when
one of the ranks is missing. As such, Greg is going to try to pitch in
at his office if and when possible - we have been brainstorming on how
he might be able to help them.
As an aside, I must compare our situations to some of those less fortunate.
I was recently told of a man and father of 2 whose wife contracted a deadly
form of cancer. He chose to stay at home with her for the few months left
of her life. His company fired him. FIRED HIM!!!! What kind of people
are out there? Afterall, companies are made up of real people.
On the forefront:
Ryan has a scheduled doctor's visit on Tuesday. Ryan will be needing an
echocardiogram to check on his heart again. So far, his heart has tolerated
the Adriamycin well.
Only ONE MORE Adriamycin!! Everyone say a prayer that these last few rounds
of Adriamycin didn't and won't do significant damage to his heart. We
were told from the beginning that because of this drug he can not do any
lifting of heavy objects or weight lifting - for the rest of his life.
I am so thankful to have this drug finished. Not only is it the one that
does damage to the heart, but it knocks the counts low and is a main culprit
in causing mouth sores. There are other chemos that he is given that also
reduce counts, but taking this one off his plate may help to keep his
counts a little higher between rounds.
Round 5 of 15 is scheduled for the second week of March. It marks the
last Adriamycin and the last time Ryan will have a spinal tap. The spinal
tap requires he is put under anesthesia which adds to the nausea accompanying
chemotherapy. He also gets one chemo called Methetrexate injected into
his spinal fluid. He will no longer have methetrexate administered this
way. Also, beginning Round 6 of 15, Velban will be substituted for Vincristine.
They are both derived from the periwinkle plant so side effects may be
the same - which include constipation and muscle weakness. The exciting
thing about introducing Velban is that this is the drug that gave such
encouraging results in the recently concluded study. It is to be given
to Ryan every week - not just every three weeks.
So overall, there are lots of changes on the horizon. All for the better
- I believe - and all to provide new experiences and sometimes new challenges.
With our network of love and support, we embrace the changes.
February 9, 2004 to February 15, 2004:
Team in Training:
Tegan is busy getting ready to run a half-marathon in honor of Ryan to
benefit the search for a cure for leukemia and lymphoma. I think about
her getting up early in the morning during these cold winter days, putting
on her running leggings, lacing up her tennis shoes, and leaving her warm
cozy bed, two children and a husband to train for this race. How amazing
is it that she was inspired by my child to fight cancer. No doubt it is
a huge sacrifice which is being made by her and her family to allow her
the time to participate in the event. Not to mention the physical commitment
by Jen to run 13 miles.
Jen is also
tirelessly trying to get financial supporters to help her meet her fundraising
goal. The race is on April 24, 2004 in Nashville, Tennessee. If you would
like to contribute, please e-mail Jen at email@example.com.
She will need to send you the form to fill out so that she can apply the
donation to her goal. If you would like to read about Team in Training,
visit their website at www.teamintraining.org
Low counts and lower energy
expected this week, Ryan’s low counts governed the week’s
activities. His white blood cell count was low which required his exposure
to others to be minimal. His energy level was lower than normal although
he found ways to play during the day - taking to a long nap to rejuvenate.
His hemoglobin was low enough to require a blood transfusion. His IGG
(immuno gamma globulins - basically, antibodies) level is also low and
we are scheduled for an IGG transfusion this coming week.
up the great work! No matter what blood type you are, the blood supply
is at a critical shortage so donate, donate, donate. As corny as it sounds
- it really saves lives - Ryan’s in particular. Now you can put
a name to a person you are helping to save - donate in Ryan Holt’s
those of you with B+ or O type blood: let me know if you are one of these
types and are willing and able to regularly donate. I am going to put
together a directed donor list.
lost without them. This week we had a special visit from Chris and Angie
(Greg’s brother and sister-in-law).
9 & 10, 2004:
Ryan: General play for low counts which means an occasional burst of energy
followed by a movie or X-box. Ryan enjoyed his last visit from Aunt Krista
and friend Cheryl before their jaunt across country. We will sorely miss
part of the week actually focused more on the other family member’s
health. Evan had an appointment which included a "pokie." Ryan
was immensely worried about this event for Evan - sympathizing with him.
I had an appointment with an oncologist to discuss my health issues. As
many of you now know, my breast cancer risk is very high (85%) given that
I have the mutated gene (BrCa2) along with my 2 older sisters who have
already contracted breast cancer, my mother and my aunt. The experts recommend
that I go on the hormone therapy tamoxifin until such time that I can
get my breasts removed and do regular scans and checks. I want to be on
the front end of the disease this time - rob cancer of its chance to invade
another one of us.
had his regular appointment today. He developed over the past couple days
a runny nose and dry cough - why can’t the germs leave us alone?
His heart rate was quite high and his white blood count, IGG and HgB (hemoglobin)
were low. We cultured a sample from his tubie site to ensure there was
no infection at his central line site. We also scheduled the blood transfusion
for the following day.
Angie arrived in time to pick up where Krista and Cheryl left off. They
were also a huge help with Evan as we needed coverage during Ryan’s
doctor’s appointments this week.
transfusion. Any transfusion makes the day rather long. We left in the
morning and got home in the evening. Thank goodness for Chris and Angie
- I had no worries about Evan because I knew he was in good hands - although
the experience might have curtailed their plans to have a baby anytime
in the near future!
A red blood
cell transfusion is given to Ryan over a 3 to 4 hour period. The transfusion
does not begin until his blood is drawn and then sent on one of the blood
runs to the blood bank. The blood bank does a number of them at a time
and they are ready for pick-up later. Once they are picked up and returned
to the office, Ryan is hooked up to the blood. Ryan understands all this
process as: We’ve given enough of your blood to them - and now we
want some of your blood back. We spend most of the day in a small room
watching movies. Since Ryan’s energy level is low when his hemoglobin
is low, we can keep him pretty content most of the time in the small room
- ordinarily he would not stay so confined.
As for blood
donations: I’ve already encouraged everyone to keep donating. The
bank generally does not accept blood just to be used by one person. If
they did, a lot would go to waste because there is a certain shelf life
for blood. I - of course - along with all of you - do not want blood to
go to waste when someone can use it. Therefore, the blood bank generally
tells you that they don’t accept directed donations unless there
is a date certain to use it. For example, a scheduled surgery. Since cancer
patients do not always know what day they need blood, it is not so easy
to do directed donations. I was not sure how often Ryan would need transfusions
so I had not attempted to forge this path. Now that he has had 3 red blood
cell transfusions and a few other blood related transfusions over the
3 ½ months that he has been in treatment, I think it is safe to
say he will be getting transfusions regularly. On your end, I want to
gather a list of a few people that are local who are willing and able
to donate regularly and have the compatible B+ or O blood type. I will
have to contact the blood bank and do the leg work on that end and eventually
have a directed donor list to call upon occasionally.
of whether you have the right type of blood or are one that is on the
directed donor list, please - please give blood. The blood bank does encourage
all to donate in someone’s name. It was so cool - this week I got
an e-mail from an old family friend, Tim Kirk. He went to our high school
with my oldest sister Amy and befriended our whole family over the years.
I have not seen him in many years. I learned this week that he lives in
Atlanta and visited some family up here last week for a couple days -
at which point he heard about Ryan. As I learned from his e-mail, after
learning of Ryan’s diagnosis, he promptly went to Fairfax Hospital
and donated blood in Ryan’s name. How can that not give you goose
bumps - in town for a couple days and our family touched his heart enough
that he drove to the hospital and donated blood in the name of someone
he had never heard of but a day before.
On a more
sober note, we learned on Thursday that Evan is not a match for Ryan.
I have made peace with this news by coming to the conclusion that Ryan
will never need a bone marrow transplant - or that if he does, we will
find that match. We are shipping Evan’s cord blood to a private
company to be stored for potential use for other family members or for
cold / flu symptoms got worse and the boost I had hoped for with the red
blood cell transfusion really did not come. Greg and I decided that the
last transfusion must have been blood from a marathon runner while yesterday’s
was likely from a couch potato!! His HbG level did go up but no other
counts followed as they had previously. We canceled any visits for the
day and focused on caring for Ryan and Evan.
for the week: Ryan’s appetite has been less than stellar the last
couple days. Today, Greg was holding Ryan and commented that he was "skin
and bones." Ryan turned to Greg and said in a serious tone, "That’s
because I have a skeleton inside of me." What a smarty-pants.
let today’s entry go without mention of Ryan’s grandpa, "Papa."
Ryan took a monster nap from 6:00 p.m. to 9:30 p.m. At 9:30, Papa stopped
by unannounced - just wanting to play with his "little dude"
(his nickname for Ryan). He stayed for hours - entertaining Ryan’s
every whim. It was - by far - the most spunk and spirit Ryan had all week.
Ryan was always in arm’s reach of "Papa" and in Ryan’s
world - it was the best day ever!
14 & 15, 2004:
a Valentine’s Day we will never forget. I am so lucky to have my
children and husband. Ryan’s illness has made me recognize that
every moment is precious and Valentine’s Day just pays homage to
that sentiment. Saturday was very low key. On Sunday, Ryan was able to
enjoy a few family visitors who were all healthy as an ox! Ryan’s
counts should be going up - according to medical statistics so it allowed
for a short visit to break the monotony. I have been hoping that Ryan’s
cold / flu symptoms would disappear but unfortunately his cough has become
a little angrier - but the runny nose has virtually disappeared. The Spring
can not come soon enough.
round 4 of 15 is set for this Thursday - along with the IGG transfusion
and pentamidine infusion.
all the well wishes and good thoughts sent our way - every day. We have
also truly enjoyed the warm meals and smiles that accompany them. Deserving
special recognition is the football cake we received on Superbowl Sunday!!
And Lisa Gillis’ pasta salad was a huge hit - even with Ryan. Barb
- I still love the carrot bread. Believe me - I could go on for pages
about all the other kind contributions to our mental and physical health.
Thanks to all of you - also - who have remembered the latest addition
to the house by sending special cards, e-mails and gifts for Evan. I also
truly get a huge boost out of the random e-mails - ranging from old friends
to strangers. Even if I talk to you regularly, I really love getting your
e-mail messages. Chrissy - I know you have contacted some others when
it has taken me a while to update this site (which I find very touching)
- feel free to keep e-mailing me also!! The e-mails are the best pick-me-up
I can get in the day. Again, it is overwhelming to have such fabulous
friends and supporters.
1 to February 8, 2004:
o Cycle 3 of 15 is done
A more difficult round for Ryan in the sense that it packed a
big punch. Only 2 more with Adriamycin now that this one is done!
o A couple visits
Ryan's counts were decent this week and thus he was able to have a couple
visits with playmates.
o More good souls
Great sisters, friends, food, neighbors, and grandparents!
February 1 - 2nd, 2004:
As is true at the end of every cycle, I feel happy to have it come to
a close. The IV steroids were a God send - especially since the mouth
sores reared their ugly heads. Can you imagine adding that to the pill
challenge? Who would let me stick my hand in their mouth when a gazillion
sores are flaring up? I dare say, NO ONE. The other big challenge early
this week were significant joint pains in the knees, ankles and wrists.
The joint pain causes a good deal of pain which prevents Ryan from being
mobile. Tylenol with codeine saves the day when the pain gets really bad.
The muscles did not seem to be too affected yet so once he takes the pain
medicine, he is able to bounce around.
February 3 - 6th:
Ryan's counts were decent on Tuesday (2,100) which means he was in a position
to be able to fight off infections. The doctors warn that his counts will
go back down next week because that is when the Adriamycin knocks the
counts down (10 - 14 days after drug is given).
We took advantage of higher counts for the week by having a few visits.
Of course, we didn't go crazy and set him loose in any crowds crawling
in germs. Chuck E. Cheese is my worse nightmare. Ryan had visits from
Amy and Daniel (my sister and her son), Krista and Cheryl (my sister and
her friend), Ben and family, and Paul (physical therapist). All of these
playmates essentially signed up for a playdate with Ryan. It requires
a quick education in Star Wars characters, Power Rangers of all colors
and series, and the Teenage Mutant Ninja Turtles. Knowledge of the X-Box
is a bonus. Ryan has also introduced his playmates to the wonderful world
of the internet - taking journeys to Disney Channel to play Scooby Doo
and Samarai Jack games. It is actually the best help for us because we
can take a break from being the playmate and have a chance to do things
like laundry or insurance stuff. Ryan also gets tired of us and loves
the new faces.
We're taking applications for a few good playmates!
Krista will be leaving Art and his boys for three months to take a job
in California with the traveling nursing company. That also means our
buddy Cheryl will be heading across country as well. Krista and Cheryl
both work as nurses for this company and have a good opportunity awaiting
them in California. Ryan will sorely miss them both - he has molded them
into perfect playmates who understand his lingo and indulge his interests.
Ryan really enjoyed the visit from his cousin Daniel and his Aunt Amy.
They came ready and willing to jump into the middle of Ryan's world. Luckily
Daniel knew how to play Tony Hawks' X-box skateboarding game.
We have gotten approval for a physical therapist to come to our house
to keep up Ryan's muscle strength and development. Ryan thinks this is
simply a playmate we have hired to run around with him. Luckily, Paul
(the physical therapist) considers this an opportunity to get in touch
with his younger self. He also has a good understanding of 3 year olds
since he has 2 at home! He does not have a specialty in pediatrics, but
he has shown a great interest in trying to learn and develop ways to aid
a 3 year old battling the effects of cancer treatment. We also hope to
tap into some expertise through a connection with a mom of one of Ryan's
buddies from day care who works in physical therapy and has a friend who
specializes with children.
Ryan's muscle weakness has been unpredictable thus far. His energy was
down this week but his muscle weakness did not reach the critical levels
that it had around New Years. At that time, he had difficulty lifting
one foot and putting it in front of the other. Since then, we skipped
a dose of Vincristine and have not had the full dose of the drug thereafter.
It is also a drug that has a cumulative affect so I fear that he will
again lose a great deal of strength - especially since the dosage is nearly
full strength again. So that he does not suffer permanent damage, we are
keeping him active (again the importance of playmates) and we are being
proactive with physical therapy. Although it was noticeable to Paul that
Ryan's energy level was down - Ryan nevertheless found 2 light sabers
and challenged Paul to a duel. I bet George Lucas never envisioned his
creation being an integral part of cancer therapy!
February 7 - 9th:
The weekend was really an extension of the week. Unfortunately, Ryan has
had to miss several birthday parties but we plan to have a private party
with each one of his little buddies once the cold and flu season have
left us. In the meantime, he wore his grandpa out on Saturday - in the
world of playmates, his Papa takes the #1 slot. Ryan wants to be right
next to him whenever he is around. Their relationship has remarkably developed
over the last several months. His Papa is so tender with him and willing
to engage in all of Ryan's favorite activities. It could melt a heart
On Sunday, my sister Lisa was able to visit with her family. Lisa has
finished her chemotherapy and has 2 weeks of radiation left. She has returned
to work during the end of treatment which - I'm sure - has been both rewarding
and draining. She has wanted desperately to come visit with Ryan and although
her time and energy are limited, she squeezed in a visit this weekend.
Ryan feels a special connection with Lisa since she also has a "tubie"
and is fighting bad guys inside of her like he is.
Ryan's love for Beyonce and Power Rangers burns on. During the Grammy's
tonight, Ryan was in the middle of a 2 hour nap. When Beyonce came on
the stage, he actually opened his eyes and watched just her piece - promptly
falling right back into his nap after her performance. Uncanny how he
knows when she is around. When he awoke from his nap - totally disinterested
in the Grammy's - he put in a Power Rangers movie. He stood before the
screen and danced away at the opening scene - all the while shouting out
the color of the Power Ranger that would next appear on the screen.
The good deeds are countless and without bounds. The dinners still arrive
with smiles, good words and prayers. The encouraging and friendly e-mails
still silently arrive - spurring my energy. My neighbors have been respectful
of our privacy, yet there if we need them - we have been fortunate to
have them surround us. And of course my list of good deeds would be woefully
incomplete without mentioning Oma - Ryan's halmony (grandma). She spreads
her love around and over Ryan, Evan and us. She keeps Evan regularly for
us and allows me to be at the doctors office with Ryan without worry.
I know Evan is getting the absolute best care when he is with her - and
Papa for that matter - he has taken a big role in caring for Evan as well.
Sometimes when I think about their selfless love and support, it overwhelms
Moral of the story: do not take family for granted.
You never know what life may dole out - the one thing you can be guaranteed
We have a few appointments this coming week. Other than that, we expect
counts to dip down again. Hopefully the low counts will not be accompanied
by yucky side effects - and pray that no germs descend upon us.