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.
January 21, 2004 to January 31, 2004:
received a Thank You card. It thanked us for sharing our time and for
allowing Ryan to spend time with her. It thanked us for the gift of Ryan.
For me, it shed a new light on our journey. It was from a playmate of
Ryan’s. A 37 year old playmate and my friend Nancy. This journey
began because a horrible disease descended upon my sweet Ryan. I have
since seen the resilience of a child, the courage of parents, the love
of family, and the beauty of friends. I have learned much; I have grown;
and I have received more from you all than I can possibly describe. I
have not - until now - considered that we have given anything to you.
Of course Ryan is a gift to us - but I now realize he is a gift to all
of us. Nancy’s card said Ryan has made a huge impact on her - that
is so cool. Here’s to the joy that comes with knowing him!
A Playful Week
Wednesday January 21st to Wednesday January 28th, Ryan enjoyed entertaining
and being entertained. His counts were low, but it didn't seem to keep
his spirits down.
months of anxiety, frustration, and deliberation, we have decided to administer
the steroids intravenously. While the doctors were not originally keen
on the idea, we all met and decided it was time to give it a go.
Cycle 3 of 15 began January 29, 2004
was administered on Wednesday January 29th. The start of cycle 3. Mouth
sores started early - bummer.
21, 2004 to January 23, 2004:
from the doctor's appointment on the 21st that Ryan's counts were low
so his ability to fight infections was low. Other than that, he was in
good spirits and had a good deal of energy.
Anyone who has followed our progress thus far knows the hideous time we
have had with the steroids. It is a hard drug for anyone to take because
of its bitterness. Greg and I have tried every form of it to see how it
tastes to try to figure out how to make it palatable - hell, not even
- just how to make it digestible. We put a drop - literally, a drop -
on our tongue and the nasty taste stays in our mouths for what seems like
an eternity - we've chased it with all foods and drinks imaginable without
any success. Now mind you - we try a little drop - Ryan has to take 70
ml per day. That's about 9 large syringes (once the strawberry syrup is
added) - each syringe requires about 4 or 5 squirts in order to swallow
it all. So, as you know, we went to the pill. I won't repeat all the vile
and sordid details of the giving the pill because I think you have gotten
the point from prior entries. Suffice it to say that we felt desperate.
I had asked
about administering the drug intraveneously at home by us. At first, I
was dismissed quite quickly. I don’t like to be dismissed, but I
was given a good reason why IV was discouraged - And so I agreed to try
to get him to take the pill since it was the safest way to administer
it. Apparently, our grueling efforts even exhausted one of the doctors
- causing her to suggest we give it thru the line. We had some convincing
to do with the other doctor.
Weekend January 23, 2004 - January 25, 2004:
complaints - a great weekend! Ryan was playful and energetic. Due to his
low counts, we kept his exposure to the outside world to a minimum. But
we did bring some of the world into our house. Ryan’s Aunt Angie,
Uncle Chris, and Aunt Janelle were in town. To say he had a blast with
them would be an understatement. And of course his beloved "Papa"
romped around with him until he dropped with exhaustion.
January 26, 2004 - Wednesday January 28, 2004:
Ryan’s appointment on Monday, we got the green light to administer
the steroid intraveneously. This will obviously improve the 5 rotten days
that begin on the day the cycle starts - in fact, they may not be rotten
counts continued to be low starting the week chemo was to begin. I’m
a little disappointed because they are supposed to be heading in the other
direction. We have not started chemo while his counts were really low
in the last few cycles.
an echocardiagram this week to check his heart. The Adriamycin (chemo)
is damaging to the heart so we need to check periodically to make sure
his heart is okay. It brings reality to the forefront when you have your
3 year old’s heart imaged to make sure it’s ticking okay.
When will less barbaric drugs be discovered to treat cancer?
One of Ryan’s
favorite playmates visited on Wednesday - my sister, Krista. She and her
friend Cheryl played on the computer with him and they all ran circles
around the house.
January 29, 2004:
3 of 15. A big one. Ryan had a spinal tap which required him to fast in
order to be anaesthetized. He then had Methetrexate (chemo) injected into
his spinal fluid. He also received Adriamycin and Vincristine intraveneously.
We gave him the steroids by IV and his other chemo (6MP) by crushing it
and putting it in apple sauce.
the chemo with a count of 700 - the lowest I can recall starting chemo.
I am not sure how this may affect the weeks between the cycles. My fears:
the side effects may be exacerbated or he may get some additional sickness
which may put us in the hospital or put his health in danger. Sometimes
the fears are worse than the reality - maybe this is one of those times
- I can only hope.
side is that he only has one more spinal tap (in Cycle 5), and he only
has two more doses of Adriamycin (in Cycles 4 and 5). I am so looking
forward to Cycle 6 around the 1st of April - the Spring will bring flowers
and sunshine along with the end of the flu season, Adriamycin and spinal
January 30 and Saturday January 31, 2004:
comes to a close. Ryan’s energy has depleted somewhat. Nonetheless,
he was capable of keeping up with his friend Ben with whom he had a short
visit on Friday night. On Saturday, Ryan’s mouth began to bother
him and eating / drinking has become painful. I am still routing for his
counts to build up before they hit their low point over this cycle. The
doctor had expected them to go up from his last blood test results on
Thursday because one of the numbers showed that there are some new cells
developing. The mouth sores generally show up when counts are low so that’s
why I am hoping they rally - and rally now. He has taken to long naps
and watching his dad play X-box.
administration is going great. I gave Ryan the morning doses for yesterday
and today while he was asleep!!! I can hardly imagine it - he didn’t
even know he was getting the horrific steroids - the bane of his existence
since treatment has begun!!!! Moral of the story: don’t give up
until you get it right.
Team in Training
want to be sure to keep posting Jen Tegan’s e-mail address for those
of you who want more information about the fundraiser or want to contribute
to Jen’s awesome journey to run a ½ marathon to benefit the
Leukemia and Lymphoma Society’s efforts to find a cure.
She can be
reached by e-mail at email@example.com.
loves girls. It’s quite humorous - and almost scary. When Greg flips
channels on the t.v., Ryan has passed up his favorite shows and screamed
for Greg to stop on BayWatch! I would say his favorite girl in the world
is Beyonce (the singer for those of you who aren’t too hip). He
gets us to log onto a music video website so he can watch Beyonce’s
video along with other videos with scantily clad dancing girls. He knows
the names of the song or singer and requests them - one common theme:
scantily clad dancing girls. At his Hominy’s house, he has a favorite
potty chair that he uses. When we had the hideous constipation episode,
we encouraged him to read something or we would read to him while he tried
to go. At Hominy’s house, he has a Victoria’s Secret catalog
sitting on his potty!! No joke!
for power rangers and other guys has not waned. He now wants us to search
out the old rangers - which has meant I have learned about e-bay. Can
you find anything on there or what? One thing I can say for sure is that
I have become more hip hanging out more with Ry and Oggie.
have a scheduled appointment to check his counts this coming week and
will likely have at least one more over the next week - that’s assuming
all goes smoothly - which we do assume. The next round of chemo is in
three weeks (I am going to try to update this site every Sunday so I’ll
keep you posted). I hope your forecast is bright and you squeeze in plenty
of time with your loved ones.
9, 2004 to January 20, 2004.........
o A Pleasant Trip to the Hospital
Over the weekend of January 10 & 11 we stayed at the Hospital to get
intraveneous antibiotics. If his doctor's office was open on the weekends,
we would have gone there. It was a first for us - a pleasant overnight
stay at the hospital.
Over the short time since Ryan's diagnosis, he has had several infusions.
This past week was no exception. He had the infusion of antibodies (byproduct
of blood) on Wednesday, January 14th. He is scheduled for more infusions
this Wednesday, January 21st.
o Team in Training
The Leukemia & Lymphoma Society hosts a race to raise money to help
find a cure for leukemia and lymphoma. A friend from college brought the
event to our attention and asked us if she could run in Ryan's honor.
It is our privilege to have her do so. If you are interested in learning
about the race and about contributing to Jen's fundraising for the event,
January 10 & 11, 2004
As you all know, Ryan had chemo on Thursday, January 8th after having
just been diagnosed with bacterial and viral infections. By Saturday,
he seemed lethargic and the decision was made to get additional intraveneous
antibiotics. We packed, dropped off his baby brother with halmony (grandma)
and made our way back to Fairfax Hospital (since his doctor's office was
closed for the weekend). The hospital has become quite a familiar place
- what a strange feeling. Ryan was administered antibiotics intraveneously.
Overall, Ryan felt well and was fairly active at the hospital. It was
a relief not to be in crisis mode during this visit.
We left Sunday afternoon with Ryan cheery and energetic. The silver lining
of our hospital visit was that Ryan was able to also get his Prednisone
intraveneously - this is the pill that gives us so much anxiety, pain,
and trouble. An option that we have considered is for us to administer
the drug intravenously. I had previously raised this option with Ryan's
primary doctor. At the time, it was considered too much of a risk - and
I agreed with the doctor that we should give it another shot. It had been
discouraged because it provides additional opportunities for infections
to enter his central line ("tubie") which can create a very
dangerous or even fatal condition - especially since his line runs right
up to his heart. We have again tried the pills - and we're not in a better
place. Time to learn how to safely administer the drug intraveneously.
January 12 to 20, 2004
Ryan has been doing very well thus far this cycle. On Wednesday the 14th,
we spent a full day at the doctor's office so that Ryan could get an infusion
of IGG (immuno gamma globulin) which is antibodies derived from blood.
TO YOU ALL: KEEP UP THE GREAT WORK DONATING BLOOD - especially during
these times with the crucial shortage!! Ryan needed the infusion because
his IGG level was low and he was fighting both the bacterial infection
and pneumonia. The antibodies helped him fight both off. He no longer
has either condition. A follow-up x-ray showed no fluid in the lungs and
his counts showed that the antibiotics killed off the bacterial infection.
Our biggest issues this week have been fighting with insurance. All in
a day of the life with cancer. It's very frustrating negotiating the insurance
terrain. Without explanation, they deny payment for critical tests. They
set up a system that prevents drugs to be delivered in a timely fashion.
Why and how did it happen that insurance controls the status of your health?
But if that's our biggest battle of the week - bring it on.
Ryan's counts hit their low point 10 to 14 days after chemo begins which
puts us at January 18th to the 22nd. We are thus in the midst of the low
point during which he is likely neutropenic (basically that means white
blood cell count so low that he can not fight infections).
We will be traveling to his doctor's office tomorrow (Wednesday January
21st) for an infusion of a drug called Pentamidine. It is given periodically
to people with low immune systems to prevent a particular type of pneumonia
that grows when the system is low. He may also need to get a transfusion
of red blood cells if his hemoglobin has reached a certain low point.
Other than his physical therapy, there should be no other doctor's appointments
Ryan was dubbed "Ry-Guy" by Jackie and Tom (Jackie was his original
daytime mom a/k/a daycare provider). This section is about our little
Ryan has enjoyed being the big brother. He likes to pat Evan on the head
and tell him about all the things he is going to teach him - like walking
and talking and playing and . . . what does Evan need a mom and a dad
for? When I took Evan for his first well-baby visit which included a "pokie",
Ryan asked if we could get Evan a "tubie" so he didn't have
to have pokies - he's already looking out for his little brother.
I have tried to coordinate play dates for Ryan. As of late, the median
age of his playmates is 40. They include us (mom and dad), Papa (Greg's
dad), Krista (my sister), Michael Socha (Ben's dad) and other friends
of Ryan's mom and dad. I have become a little paranoid since he contracted
both a bacterial and viral infection. This cold & flu season - according
to all accounts - is brutal. I want so desperately for Ryan to play with
his friends. For now, he'll have to settle for those friends that are
a little bit older. And truthfully - he doesn't seem to mind. When you
enter his domain, be prepared to chase and be chased, hide under tables
and chairs, wield a light saber, and talk intelligently about all the
Star Wars guys, Ninja turtles, and Power Rangers.
Ryan is quite particular and specific about everything - especially his
favorite action figures. He knows the name of the most obscure characters
and he knows what color light saber is carried by all. He is nearly offended
if you put the wrong light saber in the hands of one of the action figures.
He corrects you in a heartbeat. When he is wearing his new Dino Thunder
Power Ranger shirt, there have been those brave souls who have tried to
converse with him about it. They almost always start out telling him how
cool his Power Ranger shirt is - without skipping a beat, Ryan lets them
know it is not a Power Ranger shirt, but a Dino Thunder Power
Ranger shirt. I tell him that we need to teach others since they are not
all as versed in the superhero world as he is - he has seemed to take
on this mission like his new cause.
He continues to come up with funny adult-like phrases. The other day he
tugged on his halmony's hair. She asked him why he did that. Ryan responded,
"Because I'm frustrated." When he is under the spell of the
steriods and gets particularly moody, he often yells, "My medicine
makes me angry!" He anxiously awaited his Aunt Krista's arrival for
a playdate - when she arrived, he watched Krista pick up our newspaper
to bring it in - when he saw this, he said, "Oh - isn't that nice
of her" in his most approving tone of voice.
"Team in Training"
Taken directly from a letter written by The Leukemia & Lymphoma Society:
Team in Training (TNT) is The Leukemia & Lymphoma Society's largest
national fundraiser. In exchange for valuable funds raised, TNT participants
are given professional training to complete an endurance event such as
a marathon, half-marathon, triathlon, century ride or in-line road skate.
Participants with TNT, many who are beginners, train for 18-20 weeks before
traveling to destinations around the country to compete in these events.
Since its inception, TNT has raised over $420 million for blood-related
cancers and has quickly become the top endurance-training program in the
My friend, Jen, learned that 75% of the money raised goes directly to
research, patient services, professional education, advocacy and community
services. The other 25% goes toward the athletic event in terms of getting
the athletes to the race, etc. Jen has committed herself to run a half-marathon
on April 24-25 in Nashville, TN. She has set a personal goal to raise
Jen has never run a race of any distance. Her training began on January
3 (Evan's birth date) with a 3 mile run. The training team next met on
January 10 for their second run scheduled to be a 4 mile run on the W&OD
trail in Reston. Jen researched the proper attire for the weather but
was nevertheless slightly alarmed when the coach handed out a little blurb
on frostbite. Ten minutes into the run under conditions of -10 degrees
with the wind, Jen's water bottle froze and - in her words, "my eyelashes
were covered in a beautiful crystalized natural mascara from the heat
of my breath through my scarf, my polartec had ice on my back - but for
the biggest shocker - I FELT GREAT!!"
If you are interested in helping Jen reach her goal, please e-mail her
at firstname.lastname@example.org so she can
send you the donation form. The donations are 100% tax deductible.
There are a slew of people that we owe a deep amount of gratitude - and
that is to those of you who made financial contributions to Smiles for
Ryan. It overwhelms me to think of the generosity by so many of you. On
the one hand, I feel awkward and strange to accept these generous gifts
- and on the other, I feel so fortunate that Ryan has touched your lives
enough for you to help him (and us) pay for his care to fight his battle
against cancer. I wish so desperately that we didn't need it.
I equally appreciate all the other ways people have found to help us.
Jen Tegan is a great example of one helping the fight against this brutal
disease. Ryan's playmates have contributed more than they will ever know
in keeping his spirits up - a critical part of his care. The maintenance
of this website by Michael and Laura Socha. The e-mails encouraging Ryan
to keep fighting boost our energy to carry on. The suggestions to help
us tackle some of the issues we've faced with his treatment are welcome
additions to his treatment team. All the e-mails, notes, meals, and phone
messages to Greg & I lift our spirits. And of coure we appreciate
the toys, clothes, books and other essentials & non-essentials that
make our lives that much easier and brighter. And where would I be without
Oma ("mom" in Korean - Greg's mom) - she tirelessly and lovingly
provides care, support and love to Ryan and Evan.
If you are reading this entry, thank you!
It means you have an interest in and care about my sweet Ryan.
Lori had the baby!!
Evan Holt was born on Saturday January 3rd at 2:30 pm
Everything went extremely smooth. Lori went into labor at 4:30 am and
was at the hospital by 5:30am. Once all of the "numbers" were
ideal, Lori started pushing at 2:15 and Evan was born at 2:30! Way to
Evan Holt weighs 8 lbs. 4 oz. and is 20 1/2" long.
Greg was at Lori's side for the entire birth. Ryan was kept busy
at home playing with Greg's parents and his best friend Ben and his dad.
Lori's sisters and three friends were also there for the birth for "girl"
On Sunday, Ryan & Greg visited Lori & Evan at the hospital. Ryan
had a great time and absolutely LOVES his new brother and thinks it's
pretty cool that he's finally here!
Evan & Lori will be coming home Monday Jan.5th.
UPDATE from Lori (posted Friday, January 9th)
29, 2003 to January 8, 2004:
o Happy New Year!
We started the New Year off right - Ryan was feeling relatively well -
and hopefully a forecast of what's to come throughout 2004 and beyond.
o New Addition!
We welcomed in the new addition to the DiGiosia / Holt family!!!!
Evan Anakin DiGiosia Holt
Born January 3, 2004 at 2:30 p.m.
He weighed in at 8 pounds, 4 ounces and stretched to 20 1/2 inches! He
has shocking black hair just like his big brother did when he was born.
o Maintenance Phase, Cycle 2 of 15
Slow start to Cycle 2. Ryan was scheduled to have chemotheraphy on January
7, but he developed an bacterial infection and pnemonia (viral infection).
It's was re-scheduled for today (January 9) and turned out to be a rather
grueling day at the doctor's office. Let the pills begin.
December 29, 2003 through January 2, 2004
Overall, a terrific week. Ryan's disposition and health were relatively
good. The most extreme side effect during the week was the muscle weakness
caused by the chemotherapy drug Vincristine. He does his best to motor
around but at times has a hard time just lifting one foot and putting
it in front of the other. Thus far he has not gotten frustrated by his
lack of muscle strength and control. At this point, this side effect hurts
me and Greg more than it does him. He remarkably adjusts and finds new
ways to wreak havoc against the enemies of Jedi knights, Ninja turtles,
Power Rangers and the rest of his friends.
We have addressed the issue with the doctor and will begin physical therapy
soon. As I had previously mentioned, Jenny (the mom of Ryan's buddy, Jeremiah)
may also be able to help in this department since she is a physical therapist
and has access to fun equipment that can help him build up his muscle
strength. When Ryan is feeling well, it may actually in some fun play
dates with Jeremiah.
New Year's was somewhat uneventful but we were happy to move out of 2003
and forge forward into 2004. As every day passes, we get closer to curing
Ryan - our ultimate goal.
I was even able to recognize that we had a lot to be grateful for this
year. That's where you all come in. Enough said.
January 3, 2004
This date gets its own entry as it's the birth date of the latest and
greatest addition to our home. As I suspected, Evan Anakin chose his own
birthdate. At 4:30 a.m., I went into labor and got the wheels turning
for the birth date plan. I had an elaborate plan all mapped out to help
us. The hospital support team and the home support team immediately went
into action. I ended up not having to call on everyone since it was a
weekend and it was post-holidays.
We were shy one day of having Evan share his birthday with his Aunt Angie
and one day too early to share it with his mom's close friend Mary. But
he is certainly sandwiched between two wonderful women.
Once I enacted the "birth date" plan, my sisters and girlfriends
arrived ready and willing to take orders from me. (Oh - the power on labor
and delivery day.) My feet had not seen so many massages.
Greg was called in shortly thereafter and was able to stay through a good
part of the "easy" labor (post epidural) and for the birth.
Ryan was doing smashingly with his Papa, Halmony, Michael and Ben. By
all accounts, he enjoyed the day as much as we did.
The first gift Evan gave to me was arriving early so I could rid myself
of the horrible feeling growing in the pit of my stomach about the timing
of the scheduled induction. I had almost worked myself into a frenzy thinking
about how difficult it was going to be to have Ryan's chemotherapy on
Monday and then two days later have the baby in the midst of trying to
manage Ryan's 5 day intensive medicine (THE PILLS) schedule along with
the lovely side effects of vomiting and the potentially devastating constipation.
The next gift Evan gave was making the delivery so easy. I will have to
give a little credit to the doctor who also did an amazing job. I know
what most of you moms are thinking, the doctor usually does nothing but
catch - it was actually not true of this one. Anyway, it was almost (ALMOST,
I said) effortless to deliver Evan.
The third gift Evan gave us was his health. I must confess that I was
worried he may have 12 toes with all the chemo and other drugs he was
inadvertently exposed to. Although, there are certainly worse things than
12 toes. But, nevertheless, he was absolutely perfect on arrival - 8 lbs,
4 oz. with all the right appendages.
The fourth gift Evan gave us was a very healthy, hearty cord. The cord
blood collector was able to harvest a very good quantity of blood for
storage for potential use for Ryan or other family member. Since Ryan's
diagnosis, we have worked hard trying to ensure that we were able to store
the cord blood for designation for Ryan at the best facility. After several
phone conferences, letters, etc. between Ryan's oncologist, my ObGyn,
Inova blood bank, New York blood and storage bank, and CBR (private storage
company), we were successful.
Ryan's blood was drawn for something called HLA typing. Evan's cord blood
needed to be of sufficient quantity and have a certain count in order
to be useful. It was. His cord blood was collected by expert at Inova
blood bank and shipped to New York blood bank where his blood will be
HLA typed. If he is a 5/6 or 6/6 match with Ryan, it will be stored solely
for potential use for Ryan. Siblings have the greatest chance of being
a match - unfortunately, it is only a 25% chance - but we'll take it.
We are certainly hoping for a match but equally hoping that we will never
have to use it. If we do, it will be due to a relapse by Ryan after this
If it is not a match, we received permission by New York to have it shipped
to a private company for storage for potential use by other family members.
CBR agreed to accept it. My family has a special need for storing the
cord blood. My sister Amy developed breast cancer at age 39 (about 2 or
so years ago), my sister Lisa was diagnosed with breast cancer at age
39 (about a year ago), my mom died of breast cancer, my dad's sister died
of breast cancer, and a few other relatives had female related cancers
(although they affect men as well). As a result of Amy's diagnosis, the
4 sisters were invited to participate in a genetic study. Amy, Lisa and
I tested positive for an alteration on a "breast cancer" gene.
We are BRCA (BR for breast and CA for cancer) 2 positive. Krista tested
negative. Having this particular mutation (BRCA 2) increases your risk
of contracting breast cancer and ovarian cancer significantly as well
as increasing the risk of several other cancers. When we had tested for
the alteration of the gene, Lisa had not been diagnosed with cancer. Evan's
cord blood may potentially be instrumental in helping one of us as well.
So within a few seconds of his life, Evan had already provided us with
many cherished gifts. Quite an amazing feat for a 10 second old.
January 4 and 5, 2004
I was, of course, with Evan in the hospital. We both were adjusting well
to our new lives together. Although arriving with a mask on, Ryan was
able to come to the hospital and visit with us. He was thrilled to have
his baby brother and started trying to make him laugh and teach him things
the moment he laid eyes on him. Oggie was the proud papa. Of course, the
picture would be incomplete if you didn't realize that Halmony (grandma)
was elated to hold her new baby in her arms. I hesitate to call her a
grandmother because she is more than that. She cherishes every breath
of her grandchildren and cares for them every bit as much as her own children
- but it's even more than that - a relationship exists between her and
Ryan (and already developing with Evan) that can not be described in words.
Ryan's chemo was scheduled for January 5, 2004 but because I was in the
hospital, it was re-scheduled for Wednesday January 7, 2004. We were released
from the hospital early evening on January 5th. Sleep deprivation begins!
January 6, 2004
We started off well with our two sons. Unfortunately, not long into the
morning, Ryan developed a fever and the doctor had us come in right away.
His heart rate was very high - requiring his heart to work extra hard
to pump the blood through. Quite alarming to the doctor. Ryan's counts
sky rocketed. Up to this point in his treatment, I had always prayed for
high counts. I soon learned that high counts are not always good. These
counts were out of this world. They indicated that he likely had a bacterial
infection. An examination of Ryan's ear showed an ear infection. They
tested for influenza and listened to his chest. A cough that was benign
had persisted for a month and may have turned into something worse. After
7 hours at the doctor's office, we were quite drained. Halmony stayed
with Evan at our house so we had no worries about him. I had lugged the
pump to the doctor's office so I was constantly reminded of Evan while
manuevering the machine around the tiny exam room. We were all happy to
come home to see him.
Chemo was scheduled for January 7 but it didn't look likely. Either way,
we needed to come in the next day for another round of intraveneous antibiotics.
January 7, 2004
Ryan had a fever over the evening but we were able to avoid a night admission
to the hospital since it did not continue to rise after Tylenol. We made
our way into the office again in the morning. Ryan's counts were again
high but had gone down quite a bit from the day before. This, too, indicated
it was bacterial as the infusion of antibiotics had a direct effect on
reducing the counts. However, the cough that had previously seemed to
be just a nuisance may have seized upon an opportunity to advance to something
worse. Dr. Horn detected some grumbling in Ryan's lungs and so after receiving
medications, we were sent to the hospital for a chest x-ray to determine
whether Ryan had pneumonia.
This new development meant that Ryan should not have direct contact with
Evan. Since infants have not developed an immune system, an infection
can be devastating to them as well. Same concept as Ryan when his counts
are low. Halmony amazingly offered to keep Evan over night. Not an easy
task to be with a 4 day old over the night hours - to say the least. I
felt tortured that he would be gone but I think it was the best thing
for all. Ryan would be crushed if he couldn't tickle his brother.
Chemo was again re-scheduled for January 8. We were given a prescription
for a different antibiotic - just what Ryan wants - more medicine. Constipation
was also threatening to get in the way - no poop for 2 days and he was
"ordered " to have one before tomorrow or no Chemo.
January 8, 2004
Ryan's counts showed again that the antibiotics were working which suggests
a bacterial infection.
The x-ray showed that there was something in one of the lungs. He had
pneumonia as well - a viral infection.
However, he pooped and had not had any fever since night of January 6
so we proceeded with chemotherapy. He received his chemotheraphy, steroid,
antibiotics and other drugs. Since he has an infectious condition, we
were sent directly to the room and not permitted to be in the play area.
Since this has happened before, we come prepared. We bring our own play
area. Greg brings his laptop on which we can play movies. I bring an assortment
of action figures and some crafty stuff as well as a few books. We pack
food, drinks, extra clothes and - these days - the pump. But for the pump,
we tromp into the doctor's office everytime looking like we're staying
for a few weeks. We learned early on that a "short" appointment
was 3 hours and a normal appointment was 6 hours or more. We use everything
we bring so it's worth it.
We got another prescription for another drug to add to the gazillion for
the week (the dreaded 5-day period at the beginning of the cycle was looking
grim). We got home exhausted - battered and bruised. Just when I need
all the reserves of my energy to get through the pills. I was optimistic
that we could do better with the pills but was disappointed at our first
attempt in the evening. Poor sweet Ryan. He cooperated. I had said that's
all I needed. I was wrong. He tried - really hard. His body was betraying
him. His automatic gag reflex would not allow the pill to go down. He
begged us not to make him take it. He said he just couldn't do it. Despite
his feelings, he continued to open his mouth and try - he just couldn't
swallow it. Eventually the pills dissolved and he drank some juice. The
only pills he had to take today were the chemo. Starting tomorrow, the
steriods are given by mouth. These are the ones with the very bitter taste
that make him vomit. I plan to practice in the morning swallowing mini
M&Ms. Pray that this will work.
Despite the difficult times and the grueling schedule, Ryan is a joy to
be around. I have decided that I need to start jotting down some of the
sweet and funny things he says. I fear that the picture you are getting
leads you to believe that he has no quality of life. The truth is that
it paints a picture of me and my state of mind more than it allows you
to see Ryan. He brings a joy into our lives every day that is overwhelming.
Don't be mistaken, he feels the pain with the side effects and the difficulty
with medications, but he makes the most of the good moments - and tries
awfully hard in the bad moments. At some point - hopefully in the near
future - I hope to give you a better glimpse at his personality by composing
an entry just about him.
In the future...
Due to the infections coupled with the administration of chemotherapy,
Ryan is scheduled to have a 6 hour infusion of IGG next week. I don't
know much about it at this point, but basically, it is an infusion of
antibodies to help him fight the infections and pneumonia. Meanwhile,
we'll be doing our thing to eliminate or lessen the effects of the drugs.
The infections and pneumonia must be monitored carefully and any negative
change in him will likely result in a hospital stay. At this point, we
can not do more treatment to prevent a hospital stay - it is up to his
body to fight it. Obviously chemo can knock his system lower, but in Ryan's
eyes, the chemo contains his heroes fighting the bad guys. In that vein,
since he received his Star Wars guys in his tubbie today and lots of tiny
light sabers, I am confident that we will not wind up in the hospital.
At this point, I must take one day at a time with an eye to Tuesday -
the end of the majority of meds for this cycle and if Ryan's body can
get rid of the viral infection, then we are in the clear to concentrate
on fun and warding off ugly side effects. Please continue to keep us in
your thoughts and prayers. I feel the good vibes coming our way - and
we need them all.
of December 20-21, 2003
the grand scale, a good weekend. We worked hard to combat the constipation
and seem to have won. My sisters were able to visit to celebrate Christmas
early. Greg made it on his outing to visit for a few hours with friends
and see Lord of the Rings - according to him, the best movie ever.
battles involved the administration of the pills. As mentioned before,
Ryan has to take 5 pills a day for 5 days. Not an easy feat for a 3 year
old. His last 2 days were Dec. 20 and 21 for this cycle. We must have
his cooperation in order to get the pills in. If not, the pill does not
go down, the capsule dissolves and the taste of the prednisone (the steriod)
makes him vomit. Trying to get it down after that is nearly impossible.
We have tried every trick. I'd say that each pill took nearly 45 minutes
to administer so the day was governed by the pill. There is no benefit
to dipping the pill in some tasty food (peanut butter, chocolate, sugar,
pudding, etc) because his only task is to swallow. If added to anything,
it only increases the size of what he swallows. He can not chew these.
way to get him to take them is to crush the pills, and put them in a gel
capsule. That then eliminates any taste and we only need him to open wide
and we shove it down to the back of his throat, shut his mouth, and he
swallows. It was working well in the beginning. Then he rebelled - can't
exactly blame him. He began refusing to open his mouth. We encourage,
we beg, we plead, we threaten, we bribe. Whatever it takes. We have tried
forcing him by holding down his arms and legs but prying his mouth open
and getting him to swallow can not be done by force. His bite is worse
than his bark.
are important. Three times a day are the prednisone and 2 at night are
a chemotherapy. Even adding to the complication is that I can not touch
chemotherapy (while pregnant) which requires Greg to put the pills in
his mouth. Since Greg's fingers are 3 times the size of mine and Ryan's
mouth is tiny, it doesn't make for a good combination.
One of our
best methods has turned out to be a "phone call" to his Doctor,
Dr. Horn. We tell him we have to call her and her that he is not taking
them. For some unknown reason, he fears this call more than anything.
He reluctantly, through tears, will finally open his mouth. Poor sweet
because he otherwise is feeling great and having a good day and then we
have to go and ruin it by making him take these pills. Thank goodness
it is only for 5 days.
The big increase
in prednisone certainly does not help matters when it comes to cooperation.
It's the mood altering steriod. Just proves it: 3 year olds are not supposed
to get cancer.
Monday December 22, 2003
glorious day not to have to give those pills anymore!
We were working
on Day 3 without a poop and thankfully, it came - and came and came. Ryan
was in good spirits after that. Lots of energy and hungry as a bear.
We made it
on the limo that night! What a blast. Ryan and Ben were kings for the
night. I'm not so sure they understood it all - caring more about the
Power Ranger toy in their Happy Meal than the plush surroundings. But
it was definitely fun and they enjoyed roaming around the car.
my favorite part was when Ben arrived at our house that evening and Ryan
started screaming in glee: "I'm so happy! I'm so happy!" Since
his visits with Ben are rare and with other children, almost non-existent
- his comments were so genuine and pure, they made my heart swell.
Tuesday and Wednesday December 23 and 24,
I was able
to attend my work party and truly enjoyed every minute. I hope others
are as fortunate as I to have a work environment that is so tremendous.
I really believe we all feel like extended family.
an appointment in the morning on December 24th. His counts were still
very good. The doctor again encouraged us about the PET Scan results.
This was Dr. Greenberg - the doctor who started this practice. The only
damper on the news was that he told us about another young patient of
theirs with large cell lymphoma (one of the names used for Ryan's cancer)
- of which they treat very few kids - who did beautifully on treatment
and as soon as he got off, the cancer returned in full force. This other
child has relapsed 3 times, had a bone marrow transplant, and is currently
treatment free for 6 months - so all is not lost because for now he is
still fighting, but the information is a little discouraging.
I think he
told us about this child so we would keep grounded and focused. We need
to appreciate the good results of the tests, but realize they do not necessarily
paint the future. For Ryan, we are hopeful that the new protocol will
keep him from relapsing. During the time we were trying to get a diagnosis
for Ryan during the first week of November, a study had been completed
and was about to come into place to help treat large cell anaplastic lymphoma.
It basically included a chemotherapy drug called Velban into the protocol
to replace Vincristine about half way through treatment. Treatment of
this disease had shown that Velban has had remarkable results on children
who have relapsed with large cell lymphoma. The study examined the effects
of Velban when used during the initial treament and had very positive
case, it is now part of the protocol and we will be introducing Velban
in later cycles. If it's the miracle they think it is, I ache for the
family with the other child who did not have the opportunity to benefit
from it - I am, of course, greatful that Ryan will be able to take advantage
But - for
the time being, things were looking bright for a good Christmas - I just
needed to figure out how to get some presents wrapped. Thank goodness
Ryan's Aunt Janelle came by that evening and rescued me by wrapping them
Thursday December 25, 2003
came by last night and was overly generous - along with a whole lot of
other people. Greg's work sent over an enormous toy chest filled to the
top with more presents in it than most children get during their toddler
I would say
my presents were the least popular - things like clothes and Thomas the
Train leapfrog pad were glanced at while he searched for Star Wars action
figures and other cool stuff.
- his hands-down favorite thing happened to be given to him by his Aunt
Janelle - an electronic whopee cushion. He figured out which noise went
with which person. His dad's (Greg) was the longest noise and was - according
to Ryan - the stinkiest.
perhaps the best Christmas we have ever had. Ryan was spunky, energetic,
playful, and happy. And even more importantly - we appreciated it and
recognized what a beautiful gift he was able to give us.
Weekend of December 26, 27, 28, 2003
pleasant weekend. Ryan's energy started to wane over the weekend - as
well did his appetite. The food issues are ones we are all too familiar
with prior to him being diagnosed with cancer. We have started our ususal
tricks to get him to eat. On Sunday he woke up late at 10:00 a.m. and
then took an unusually long nap from 2:30 to 7:00. His body is definitely
trying to rejuvenate.
- as of Sunday - he has not developed the mouth sores that we have been
expecting by now, he has gotten some blisters on his fingertips. A weird
trade-off. While I do not like the ones on his fingertips, I prefer them
to his mouth. I still expect him to get the mouth sores but I have faith
that it will be a mild case since his counts should be elevating as we
get to the time he receives chemo again next week.
to negotiate the stairs and step over small items has diminished with
the muscle weakness. We have already started to think ahead to help in
this department: Jerimiah's mom who is the mom of one of Ryan's buddies
from Jackie's house (his first day care provider and "day-time"
mom) is a physical therapist and has offered to help us with some fun
activities to keep up his muscle strength. I'm hoping that we can make
a play date out of it when Ryan's counts are high.
Most of this
past weekend was dedicated to getting ready for new baby - and attempting
to clean up the disaster after the Christmas tornado invaded the house.
I am thinking that I may go into labor earlier than the induction date
- wishful thinking? Actually, I love being pregnant. The reason I would
really like to get things going is that I don't really think Jan. 7 is
very good timing. Ryan's chemo is Jan. 5 and it's the day that the 5 pills
a day start. I will not be able to hold him being so pregnant and can't
help with the pills those first two days. I will then be completely out
of commission and in the hospital for 2 or 3 days with new baby. Again,
I can not comfort him and can not help Greg with the pills. It pains me
to think of how hard that week will be - and even more so without my help.
No doubt they will succeed and get through it all. I hope Ryan appreciates
the reward: a new baby brother. He has decided the name will be Evan Anakin
- and I like it. Greg is not too sure on the middle name but I am sold.
No particular date
has certainly brightened each day in some way regardless of the challenges.
He loves to challenge us physically, emotionally and mentally. His vocabulary
is a riot - he enjoys using words like "cooperation" and "disgusting."
I would say the latest thing he says that cracks me up is "What -
EVER." It's hilarious in the context he uses it. I ask him if he
would like apple juice or orange juice with his liquid medicine that he
takes every day. "What - EVER." He asks me to help him find
some small, innocuous weapon that belongs to a lego power ranger or star
wars guy - I tell him that I can't keep track of all of those little things
-- response to me, "What - EVER!" I'm not sure where he picked
Ryan is also
a little doctor himself these days. Ryan's central line ("tubbie")
has a very secure dressing on it which must be changed once a week. It's
an important procedure because this is the site where the concern of infection
is great - given how serious it would be if an infection entered through
that area and spread directly next to his heart. When he first got it,
it had to be changed every other day. It hurts when you remove the bandage,
of course. And as you can guess - not a very pleasant experience for Ryan
(and us). We learned from Kim Gumabay (my guardian angel) that there was
a solution called detachol to help remove it without the pain (why no
one in the medical field just offers such information is beyond me).
on I decided to put a sympathy dressing on me. I continue to have one.
We change mine as regularly as Ryan's. Ryan checks on it regularly and
when he sees the edges getting frayed, he announces that it's time to
change it. Today was one of those days. He declared that my bandaid (his
word for the dressing) was dirty and it needed to be changed. I asked
him if it would hurt. He said "no, mom - we have detachol."
He also promised to hold my hand.
And, of course,
Ryan still enjoys light saber battles. I just can't figure out how he
always ends up with the most powerful light sabers.
note: thanks for all the delicious food. We couldn't possibly thank everyone
enough for all their good deeds. I can certainly say it is a relief to
not have to think about what to prepare for dinner. Of course, I am getting
rather spoiled - and even worse - I really like it!
We will try
to get some pictures on the website sometime soon. Ryan's hair is still
hanging on. He lost about 75% of it but the rest is being stubborn. I
have no idea at this point whether that much will stay or if it will all
take a few more rounds of chemo to fall out. Anyway it happens, he is
still cute as can be. His smile can make you melt.
Ring in the
new year with lots of love, laughter and joy - we will be doing the same.
We will be wishing all a happy new year at midnight - and if you have
a moment around midnight, think of us, too.
PET Scan - great news - it was negative. What does that mean?
It doesn't change the prognosis or course of treatment, but it does mean
that Ryan is responding to therapy very well - in fact, the best you can
The PET Scan is a very sophisticated test and is currently the most scientifically
advanced test available to measure Ryan's condition. For Ryan, they injected
a radioactive glucose solution and took pictures of his body in cross
sections. Glucose sticks to the particular protein (called CD 30) identified
with Ryan's type of cancer. The results were negative - meaning they could
see no cancer cells and there were no hidden pockets of cells anywhere
in his body.
We continue to muddle through the side effects which control the day.
Ryan had to fast prior to the PET Scan because he had to be put under
anesthesia. The test took place from noon to 3:30 p.m. He was feeling
out of sorts because of the no eating or drinking thing (not even ice
chips) and was pretty darn hungry when we got home at 4:00. Unfortunately,
a migraine headache took over - something he has never experienced before
- and his defensive mechanism was to sleep from about 5:00 to almost 10:00
p.m. When he awoke - migraine gone (thank God) - he had very little time
left to eat and drink before a new fasting began.
and spinal tap. Again, Ryan had to be anesthesized so no food or drink.
We got to the office at 9:30 and the procedure was underway by 11:00.
He woke up grouchy (as most of us would) and began drinking as soon as
he could swallow. Due to his low hemoglobin level, red blood cells were
ordered from the blood bank so a transfusion could be done.
In case anyone is wondering whether they should still donate blood - the
answer is a resounding "YES." Even if you are not Ryan's blood
type, there is a huge shortage of blood and if Ryan's condition inspires
you - then great. A funny aside: someone (who it was escapes me at the
moment) went to give blood on behalf of Ryan. When the blood bank was
told who it was being donated on behalf of, only the name "Ryan"
came out at which time the worker said, "Holt", right? How amazing
that so many people have generously and unselfishly given their blood
for such a good cause (Ryan and all others in need).
Although it was an exhausting day (we didn't get home until after 6:00
p.m.), the day actually went well. We didn't quite beat the nausea / vomiting
but it was kept to a minimum. It's amazing how red blood cells restore
color and energy. Prior to getting the infusion, his lips were virtually
invisible because they had no color. He was so pale. His energy was depleted.
A few hours later, with donated red blood cells (we tell him he's getting
some of his blood back because they keep taking so much that we asked
for some of his back), he is a new little man. His counts jumped an unbelievable
amount. In fact, it puzzled me. He ended the day with a count of 9,900
(above normal!) for the count associated with white blood cells. His hemoglobin
sky rocketed and his energy was back along with some rosy lips.
The focus was coping with side effects - mainly with diet and medications.
Although he takes a slew of meds on the day of chemo and for the 4 days
following chemo, he enjoyed a good part of the day. Of course, he still
hates taking the medicines, but the medicines to reduce vomiting and to
eliminate constipation seem to have worked. We avoided the nausea and
thus far (keep your fingers crossed) the constipation.
He takes one chemotherapy orally for 5 days and the steroids are back
for 5 days. He needs to do them in pills which is challenging with a 3
year old but already he has started to adjust. One crazy kink added into
the mix: the dosage of his steroids increased dramatically. He used to
take a total of 18 ml's a day and now - during the maintenance phase,
he takes 70 ml's per day (for 5 days). I think my little Hulk could scare
the green skin right off the real Hulk. For some reason I'm finding it
humorous to see his temper flare. It is over the most innocuous things
- like who is going to put his socks on. I like when he's spunky rather
than limp and pitiful. It would not be pleasant in certain situations
but here at home with just family - it is not so horrible. Sometimes I
need to pull some patience out of a hat, but overall - a side effect I
can deal with. His appetite has been fierce since upping the dosage of
steriods. Again, a side effect I not only can live with - but enjoy.
Ryan's grandpa has been visiting every evening. I have watched their relationship
grow over these past few days. Ryan has enjoyed his company - I dare say,
more than mine or his dad's! They continue to have ferocious light saber
battles and play all sorts of imaginary games. It provides such great
relief for Greg and I to allow us to tend to other business like insurance
issues and other household duties. Occasionally, Greg and I even have
our own conversation - imagine that!!
We have gone so far as to make plans outside of the home. A monumental
event at this point. I am hopeful that we will get the hang of these phases
and will figure out the best time to plan outings for us individually
and as a family - and this is our first go at it. Greg plans to go to
lunch and see Lord of the Rings with a few buddies this weekend. I plan
to go to my work holiday party which has always been a highlight of the
holiday season for me.
And for the family and Ryan's mental health: we plan to go to the Miracle
of Lights early next week. It is an event which benefits children with
cancer and is a holiday light show which spans a few miles with nothing
but lights that you view from the comfort (and germ-free safety) of your
own vehicle. If all goes as planned, we will be riding in style in a limosine!
Our friends Michael and Laura (parents of Ryan's pal Ben) have a client
who is providing the limo for us. I am praying that Ryan is up for it.
He deserves it.
much yet certainly not forgotten is the new baby on the way. My doctor
has scheduled me for induction on January 7, 2004. Of course the baby
will likely decide his own birth date. We are looking forward to welcoming
him into our family. Ryan talks about him and tells anyone who will listen
that his baby is coming after Christmas. I, of course being a little OCD
myself, am wondering how we will juggle it all - but somehow it always
works out. I have the best support system imaginable so I can not let
worry swirl around in my head. First and foremost, my mother-in-law will
be like a 2nd mom to the new baby. She will shower more love on this baby
than most humans get in a lifetime.
As for Ryan over the next week: His next appointment is on Christmas eve
to check his counts, administer a drug intraveneously to reduce the chances
of pneumonia, and for a possible tranfusion. His counts will likely be
getting low right around Christmas which probably means the start of the
mouth sores for about 5 to 7 days. The following week is a big one: chemo
for Ryan and new baby for the family.
My next update will probably not be until after Christmas since we don't
anticipate any big events over the next week (at least we hope not). I
will attempt to pull off the whole Christmas thing w/ wrapped gifts and
all. Please have a fabulous holiday with your families. And allow me to
thank you for letting me write this as if it were my personal journal
- it has become quite therapeutic for me. Although it can be hard to sneak
away and find the time to do it, I gain as much (or more) from it than
you all do. I am also greatful that it will provide details for Ryan when
he is old enough to absorb all that he has endured at such a tender age.
Warmest regards and happy holidays,
Monday Dec.15th Update...
the hospital on Wednesday (December 10), we have - of course - enjoyed
being home. Even with some of the daily challenges, the comfort of home
can not be substituted.
On Thursday (Dec. 11) we had to hook Ryan up again to
his TPN bag (the nutrients and fats which are infused over a 14 hour period).
While the task is a little daunting, it did not seem to bother Ryan in
the least bit. We did tell him that we prefer for him to be mobile and
to eat on his own because it is better for him which inspired him to try
to eat. His mouth sores persisted on Thursday so it was necessary to hook
him up to the TPN.
On Friday (Dec. 12) we had a doctor's appointment. We
were going to check on his blood counts and to determine if he needed
a red blood cell transfusion since hemoglobin had been low for several
days. Although he did not need the transfusion, we spent nearly 5 hours
at the office because his heart rate was extremely high. Blood was taken
to be sent out to culture. If he had bacteria in his blood, we would have
to be admitted to the hospital for intraveneous antibiotics. The results
would not be available for up to 48 hours. (As usual, no news was good
news. We never heard from them over the weekend.)
Ryan's white blood cell count was very high (yea!) so we had a visitor
for him that evening - who else, but Benjamin! They played their little
hearts out. Power Rangers were the big hit for the day. Ben and Ryan doned
their power ranger costumes and attempted to save the world. Of course,
Star Wars was ever looming and the power rangers often carried light sabers.
With Ben's presence Ryan began eating well in the evening but not good
enough for the day so the TPN bag was attached to him. He wanted to hook
it up before Ben left because he wanted Ben to see it. They spoke for
several minutes that evening about Ryan's health - Ryan told him about
his mouth sores. So sweet and innocent.
The possibility of an infection led us to be very vigilant on Saturday
and Sunday (December 13 and 14). On Saturday Ryan did a very good job
eating and we did not administer the TPN. Late in the evening I got a
little paranoid because he threw up and was sweating profusely. I made
a 1:30 a.m. phone call to the doctor who quickly allayed my fears - well,
for the most part. I may have overfed him. I just can't win!
As did most of you, we woke up Sunday to some snow. Ryan was quite excited.
He really enjoys this time of year - especially with the holiday lights.
Often during the day he has asked us to turn all the regular lights off
and leave on only the Christmas lights because he wants to "see Christmas."
He and his dad ventured into the front yard and made a little snowman.
Halfway through Ryan realized he was too cold and decided to let dad finish
the snowman but he watched him through the front window.
Ryan is amazing as usual. I sometimes ache to see the changes (supposedly
temporary - which I need to constantly remind myself of) in his little
body. He does not have the strength he had a few months ago. He uses his
arms to get up the stairs. He has taken to a small and light stick as
his makeshift light saber because he can't hold some of his heavier light
sabers. His speech - while he still has an amazing vocabulary - is a little
labored. His legs and knees ache at times. The absolutely amazing thing
is how he doesn't let it stop him. He adapts. Thus far he makes no complaints
about any of the changes. He just says, "I can't carry this and get
up the stairs, mom. Can you hold it?" And off he goes - searching
for some action figure to play with - calling them all by their names
"Barriss Offee; Shak Ti;" etc.
I have encouraged him from the beginning to ask questions of the doctors
and nurses. Well, he has taken me up on my offer. On Friday, Dr. Kitchen
was feeling his neck for lymphnodes. She made a comment that she couldn't
feel any nodes (a good thing as far as the cancer in the lymph system)
- Ryan heard her and thought she said she couldn't feel any "nose".
He started giggling and told her, "My nose is not on my back - it's
on my face." Again, so sweet and tender and innocent.
Sunday (Dec. 14) and Monday (Dec. 15) have been quite
pleasant days. He ate well on Sunday and apparently had just the right
amount because he did not do a repeat vomit performance. He was very playful
and constantly made us smile. He is enjoying his sticker book which I've
explained before is our tool to get him to swallow the medicine a little
easier. I have told him that once he fills a page with stickers, he has
provided me with enough power to get him a little present. Then I added
that if he kisses me, it makes me that much stronger and I might be able
to get a Star Wars guy or Power Rangers guy if he gives me a kiss (by
the way, a friend of ours works for a toy company and sent us a huge box
of Star Wars stuff and Power Rangers stuff from which we have taken a
toy at a time out for our little game). After the page is complete, he
marches over to me and plants a big one on me. Now both of us benefit
from the bribery!
The big bummer in the household is that Greg has been under the weather.
He has essentially been put in isolation (confined to the guest room)
while he has had body aches and chills. When he emerges from the room,
he wears a mask. Sleep has proven to be the best medicine and he has shown
improvement today (Monday). We're hoping it's just a 48 hour thing.
The upcoming week in review:
Tuesday (Dec. 16)
We are scheduled for a PET scan tomorrow (Tuesday). That means Ryan is
not allowed to eat or drink for 8 hours before the scan. Michael had previously
given a great description on an earlier entry when we were in the hospital
which explained the PET scan. In assessing the day, it will entail general
anesthesia, radioactive dye injection and scan which will likely occupy
us from 10 a.m. to 4 p.m. Since I am 37 weeks pregnant, they tell me I
should not cuddle him much for 24 hours - not sure I'll be able to comply
with that one but will do my best to take precautions.
On Wednesday (December 17), we start Day 1 of Cycle 1
of the Maintenance Phase. Again, no food or drink for several hours before
our appointment. We will arrive at the doctor's office in the morning
for a spinal tap (local anesthesia required), injection of chemo (methatrexate)
in the spinal fluid, and administration of 2 other chemotherapies (adriamycin
and vincristine) through his central line. We will begin giving him two
drugs that day for 5 days (prednisone which is the steriod and a new one
called 6 MP). Our main focus will be on eliminating nausea / vomiting
for the first few days and providing the right kind of diet to avoid the
severe constipation which landed us in the hospital for a week.
Once we weather those, we look forward to a splendid few days leading
up to Christmas. While we have received many good wishes and love from
all of you for the holidays, please know that we return the same to you
Please enjoy your families. I know the holidays are hectic and busy -
just don't forget what is really important. Take time to sit and play
together. It's really that simple.
from Lori, Greg & Ryan:
Our First Unexpected Hospital Visit
As you all have learned, we were in the hospital for the last week. At
times, it was our hardest challenge to date - both emotionally and physically.
It was an experience that we have weathered and hope to avoid forever
What led up to the admission: From my prior entries, you may recall that
Ryan did great with his chemotherapy on November 26. The day after was
Thanksgiving and on that Thursday and Friday, he was happy and healthy
- and he was eating a lot. Unfortunately, the diet was not appropriate
for him. If I could describe how much shredded cheddar cheese he ate,
you might think I was exaggerating. He loved it. I was thrilled. Up to
that point, we were trying desperately to figure out ways to get his calories
up and find soft foods that he wanted so he had something he enjoyed when
the mouth sores came along.
Well - one of the drugs, called Vincristine, has a common side effect
of constipation. I knew this, but he had had Vincristine on 3 prior occasions
and it had not effected his bowels. I thought it was just one side effect
that my child would not have. What I did not know is that Vincristine
has a cumulative effect. Hence - our problems began.
On Saturday (11/29), he was quite active but complained of tummy pains.
In retrospect, he had eaten very little that day. I then realized that
he had not pooped (very technical term) since Wednesday (the day of chemo).
We are instructed by the doctors to report to them if 3 days go by with
no poop. For us, that was Sunday.
On Sunday (11/30), much more severe pains began for Ryan. He also refused
to eat anything. We contacted the doctor and were prescribed Miralax (a
laxative powder to add to drinks and food - tasteless). It did nothing
On Monday (12/1), I started to feel panicked - but we had a scheduled
doctor's visit so we had an opportunity to get some hands-on care and
advise. He had gas in the morning and the nurse practitioner heard some
movement. We were encouraged that things were moving. Unfortunately, nothing
was ever produced and his pains were periodically extreme. His hunger
strike had reached Day 3. Towards the late afternoon I made another call
to the doctor who recommended a myriad of other over-the-counter remedies
- none of which worked. One in particular made him vomit that evening.
I felt sick.
On Tuesday (12/2), we revved up the regimen to Get the Poop Out (as our
campaign took on a whole new meaning and name). Still nothing but pain
and no sleep and no eating. Since basically Saturday, Ryan (and Greg)
did not sleep. I got minimal sleep as I could hear and monitor the activity
in Ryan's room with the bouts of pain. Ryan felt so bad that the nights
were dotted with periods of half-resting followed by pain. At this point,
Ryan had been very inactive since Sunday - preferring only to be held.
We felt helpless.
On Wednesday (12/3), we went to the doctor's office to get help for this
problem. After witnessing his pain, the doctor advised us to go to the
hospital where he could get morphine and around the clock help to get
his bowels moving. We ventured to the hospital from the doctor's office
late in the afternoon when a room opened up. (The website had told you
all that it was Thursday but in fact it was Wednesday that we were admitted.)
The Hospital Stay
Wednesday we had an x-ray. Surprise, surprise - it showed a ton of stool
in the upper GI tract. Fortunately, it showed no sign of other blockage
or leaking of his colon. The doc wanted a CT scan to be able to see the
walls of the colon. Wednesday night was pretty bad. Day 5 of the hunger
strike and pain increased. His belly began to get quite swollen. He was
given a hefty dose of medicines to produce the bowel movement. Mind you,
this was the only thing he was putting in his mouth so he was even more
miserable. He was only on IV fluids which provide very little nutrition.
Still no sleep, no eating and no poop. We did have the morphine which
was a double-edged sword - it relieved some pain, but it is a constipating
On Thursday (12/4), I was in a deep, dark place. I had reached a new low.
All day was the same. He was either asleep as a defensive mechanism or
he was in extreme pain. His belly now looked like one of those children
we are all familiar with who are starving. It was so distended that he
felt pain when he was being held. Additionally, his counts were taking
a dive. "Counts" is the phrase used to describe his level of
white blood cells which fight infection. As I had explained in previous
entries, there is a calculation done to determine his counts. Depending
on the number, he may be neutropenic. If neutropenic, his numbers are
so low that he can not fight infections. Of course the hospital is a dangerous
place to be when your counts are low because the hospital deals with disease
and it is walking in the halls everywhere. The magic number in the hospital
is 1000 or below - then you are neutropenic. My doctor takes a more liberal
view - if you are 500 or below - then you are neutropenic. On Wednesday
when we had arrived, his counts were 300 (neutropenic). On Thursday, they
were 187. When I left on Thursday, I felt dejected. Day 6 of the hunger
strike - a desperate feeling for a mom and dad. On a positive note, the
CT scan (which was traumatic to undergo because he had to drink 8 oz.
of yucky juice beforehand) showed no additional problems in the GI tract
- just lots of stool.
Friday (12/5) - I arrive to what I think is a very happy start. He had
some sort of stool at 5:30 a.m. I won't go into the consistency (unless
you ask) but suffice it to say, I thought it was very positive to have
something exit his body. Still lots of pain and no eating and no sleep
for the weary Oggie (Greg) and Ryan. I later hear from the doctor that
what was produced was not the main event and we were basically not in
a much better position than before - only temporary relief for Ryan by
getting lots of the fluids in the colon out. Talk about an emotional roller
coaster. Day 7 of the hunger strike and Day 9 with no poop. No end in
On Saturday (12/6), I returned to the hospital expecting more of the same
- I didn't want to get my hopes up. (I stay at Mark and Barb's house about
2 miles from the hospital every night from about midnight to 8.) Much
to my dismay, Ryan had developed a fever and his "tubie" (central
line IV) was not working. Evidently, he had a clot in the line and his
medicines and fluids being sent through the line had to be turned off.
Another medicine was injected into the line to dissolve the clot. Thankfully,
it was successful and the line began working again. We had this problem
one other time (day of last chemo treatment). The great news was that
he did not have to do a dye study to determine if there what the problem
was which could have been some very serious things resulting in a new
The day was a little bit brighter when we learned his counts went up to
340. And we were hopeful when that evening when he produced more of the
same stuff as Friday morning through his bowels. We were cautiously optimistic
that the big one was coming. I've described his condition to this point
as follows: it's like 7 days of HARD LABOR without an epidural - and no
C-section. Imagine the discomfort and pain. At times over the last few
days, he looked like a wild, caged animal who was reaching out desperately
for help that would not come - his eyes pleaded with us for relief - we
could do nothing.
I was THRILLED when that evening he said he was hungry (for the first
time since over a week) but was sad to hear him make his first complaints
that evening of his mouth hurting (the dreaded mouth sores were on their
On Sunday (12/7), a pediatric gastrointestinal specialist got involved.
We tried new medicines and got a new x-ray to see what was in there. The
physical exam of Ryan showed that his tummy was getting smaller and more
pliable (a good thing indicating stool is not stuck in there). We still
had no signs of the big one and he still had significant pain, but it
was improving a great deal from the previous few days. His counts, however,
took a big dive to 40. It now became critical to address his low counts
with medication and to address his lack of any nutrition for over a week.
We began neupegen shots and he was put on TPN.
Neupegen shots increase your white blood cells. TPN is nutrients and lipids
(fat) that is already digested and fed to you intraveneously. Some of
you may be wondering why these things had not been done before. I was
aware of both and had asked on several occasions whether it was necessary.
I received very logical and satisfactory answers as to why we were not
As for neupegen, it is not done during the induction phase - or while
you are in active treatment with chemo. It builds up things (I say "things"
because I can't recall the technical term - I think the doctor said antibodies)
to fight against the chemo. Not a good thing. Well, the doctor decided
to skip the last Vincristine (the last chemo to be administered in the
induction phase and the constipating drug) so he was no longer in the
induction phase - therefore, he was officially in a resting phase before
the next cycle. He got his first shot of neupegen on Sunday evening.
As for the TPN, it is dangerous to the liver and has some other serious
side effects that are unwanted. If possible, you avoid it. At this point,
Ryan had not eaten for basically 9 days. We had pushed it as far as possible.
He wanted - finally - and desperately - to eat on Sunday, but his mouth
sores prevented him from eating anything. Apple juice burned, saltine
crackers hurt and burned, mashed potatoes had nearly invisible flecks
of pepper that irritated his mouth. The TPN was hooked up.
On Monday (12/8), the GI specialist said the scans looked as if most of
the stool had been eliminated despite the fact that there was never a
big one. It appeared that he mainly had gas. His counts moved up to 104
from the neupegen. But, the sores were unbearable. He stopped talking
- and he is a very verbal kid - it hurt when he moved his mouth. He couldn't
tolerate popsicles. It got so bad that water was bothering him. Again,
his "tubie" was being finicky. The de-clotting med had to be
sent through the line and the TPN turned off temporarily. The fats were
the likely clogger. His complaints about his belly were minimal but his
mouth complaints were all-consuming. I somehow felt a lot better, though,
because I knew the mouth sores were temporary. I felt sorry for him, but
I knew we were going to get through it. We got another neupegen shot that
night to boost the white blood cells. I learned during this stay that
mouth sores go away as the counts go up.
On Tuesday (12/9), his counts jumped to 1,104!! But the mouth sores had
taken over. He basically pointed and made grunts to communicate. He kept
his mouth in a position that allowed his lips not to rub against the inside.
It was quite pitiful. He was constantly indicating that he was hungry,
but there was nothing that he could get in without a lot of pain. I tried
Gerber's baby food - carrots and any other thing you can think of. He
liked the taste on his lips but once he had a small spoonful, it was a
disaster. We had to stay on the TPN. We got another neupegen shot. When
on neupegen, they want sustained counts of 1500.
Despite all of these challenges, Ryan wanted to play. He had started showing
those playful moments the day before. On Tuesday, it was wonderful when
Ryan heard the sounds of a robot in the hallway. For the FIRST time since
our arrival (6 days), he asked to go out! We had tried our best to get
him out and basically forced him several days before because being active
is helpful for the bowels. When we did, he was in agony and pain the whole
time. Now, he was asking to leave the room! Happy Day! We met StarBot
the robot - he happens to be friends with R2D2 and C3PO! Ryan followed
him as he made his way down the hall visiting with other kids. The robot
was thrilled to have brightened up his day so much and was delighted to
have him accompany him.
Wednesday (12/10): His counts were 6,936 - yes, nearly 7,000!! We had
not seen anything close since the first day we got the counts before the
chemo started knocking it down. Since the counts went up, the mouth sores
began to get much better. They still bothered him because they don't just
disappear - they have to resolve on their own - but that's what they were
doing. Imagine 50 canker sores in your mouth - that were starting to go
away. You're still fairly miserable from them.
Since his counts went extremely high, we discontinued the neupegen shots.
The TPN, however, was still on board. We got things rolling, though, to
get home and do what we can there. We were anxious to put up that Christmas
tree. We left the hospital in the afternoon and met with a home nurse
to figure out the complicated process to hook Ryan up to the TPN for a
14 hour infusion over night. I got a chemistry lesson as well as learned
the ins and outs of hooking up medicines through the IV and using a pump.
A little overwhelming to learn in an hour or so without a nurses degree.
The annual Christmas party for kids with cancer was Wednesday night at
the hospital. We decided to try to venture out to it - mainly because
StarBot was making an appearance. We went to the party which was pleasant
but a little much for Ryan's day - he was exhausted. We did see StarBot
and got pictures with him - that alone made the trip successful.
Thursday - today (12/11): The infusion of TPN at home was successful -
hopefully we can repeat it again tonight. But really the main goal is
to get him to eat. We are making a chart of everything he is eating to
show to the doctor. And, I'm not above bribery. (desperation sets in)
We had instituted an incentive plan with his meds originally: He can earn
stickers for the medical stuff he has to undergo. Once a whole page of
stickers are filled in the book, he can get a present. I have now added
food and drink - the stuff that has Miralax and fiber added. Yummy, yummy.
I'll have to ween him off the idea of the present for food eventually,
but for now, I'm anxious to get off the TPN so his liver doesn't suffer
As I type, Oggie (Greg) is putting up our new artificial tree (Ryan can't
be around live plants & flowers). We will be decorating with lights
and ornaments today!! Lots of fun.
The Good News
We had the CT of Ryan's neck and chest when we did the abdominal scan.
The doctor said it was beautiful and could not be more pleased with how
they looked. Overall, this is the most important thing. The side effects
can be devastating for the moment and occasionally can be life threatening
- but the real battle is against the cancer. We're on our way - it's a
long road, but we're heading in the right direction.
The docs want Ryan to have a little rest before starting the chemo for
Cycle 1 (of 15) of the maintenance phase. The plan is to have the chemo
on next Wednesday. We will be getting all the drugs plus one additional
one on that day. That means anesthesia and the spinal tap as well. For
us, we need to focus on the diet and make sure we NEVER repeat the last
couple weeks. On the day of chemo and the few days after, we need to combat
the nausea / vomiting again - and then the only hard time between phases
should be the mouth sores. We'll get it down. I feel optimistic.
I'm especially glad to be getting the ornaments out and decorate the tree!
I have never been so excited for gawdy lights and goofy decorations in
Thanks for your continued love and support. We love and need you all.
HOLTS ARE AT THE HOSPITAL
Ryan, Lori & Greg are currently at INOVA Children's
Hospital, Fairfax (Fairfax Hospital) and have been there since Thursday
(12/4) of last week. Ryan was suffering with severe gastro-intestinal
pains due to constipation. They took Ryan to the doctor on Thursday of
last week to try and get the problem fixed. They tested his blood counts
while he was there and he was at 100, which is extremely low, plus he
had dropped a pound in weight. This, in addition to the pain he was experiencing,
The doctors immediately admitted him to the hospital where he was given
IV fluids and has undergone x-rays, MRI's, and a battery of gastro related
medicines to help "move" his condition along. At the hospital
his counts had dropped as low as 40! He hasn't really eaten anything in
over 10 days due to the pain in his stomach and the re-emergence of the
mouth sores. He is currently receiving nutritional supplements intraveneously
and is just now starting to respond to the treatments for this temporary
Lori & Greg ask that you DO NOT try and visit them at the
hospital due to the HIGH RISK of infection. They also
request that you DO NOT call them at the hospital as Ryan's only
form of sleep is taking short naps throughout the day (when the pain is
not too bad) and the telephone wakes him. Thanks.
They do ask that you keep them in their thoughts and prayers and continue
to send your well wishes and words of encouragement and support thru the
e-mail link on this website.
They really enjoy hearing from you in this way.
will keep you posted as to when they will be returning home and any more
Just spoke with Lori and here is the latest........Ryan
developed a low fever today and is now receiving antibiotics to fight
off the infection (fever is an indicator of infection). The doctors won't
release him until he's been fever free for at least 24 hours AND the other
problem has passed. So, it
looks like they'll be at the hospital until at least Wednesday/Thursday
Tuesday 12/9 (morning update)
Ryan is, thankfully, not in as much abdominal pain this morning. The problem,
according to a 2nd X-ray they had yesterday, seems to have "cleared"
thru. He is currently only on two drugs (one a narcotic, the other an
antibiotic) whereas before he was on as many as eight! His fever has also
gone away thank goodness.
His mouth sores, however, are worse as ever. The inside of his mouth is
so full of sores that it's almost all white from the over population of
sores. The sores, you may recall, are a direct result of the chemotherapy
and, unfortunately, will reoccur on a regular basis for the next year.
As a result of the overpopulation of sores, he's not eating any food and
will only drink sips of water.
Also today they may be getting what's called a "PET" scan. The
purpose of the PET scan is to look for microscopic pockets of cancer cells.
The scan moves up and down the entire body taking "slice pictures"
that tell the complete story of what's going on in his body. It lasts
about two hours and he has to be put under general anesthesia for the
procedure so, he'll also likely receive a spinal tap and spinal chemo
at the same time.
As far as going home......maybe tomorrow. They want him off of narcotics
before they release him.
As Greg was finishing giving me the updates for this morning, a clown
and Rudolph the Red Nosed Reindeer walked in to visit with Ryan. Very,
very cool! Have fun little buddy!! We love you!!
THEY'RE GOING HOME TOMORROW (Wed.)!!
Fever is gone, gastro stuff has cleared, blood counts are over 1,000,
and he's up and walking around. Mouth sores are still a problem but, everything
else is better.
They'll be staying at the hospital until about 7pm tomorrow as they want
to attend a Christmas Party they were invited to on the Oncology wing
of the hospital.
Today Ryan was visited by a clown, Rudolph the Red Nosed Reindeer, and
a REAL robot. The Robot (remote controlled by a man behind a drape with
a cool headset for talking to the kids through the robot) came onto the
Oncology wing to visit all of the kids. When Ryan heard the robot in the
hallway he immediately hopped out of bed and ran to the hallway. Ryan
absolutely LOVED it! In fact he loved it so much that he proceeded to
follow the Robot throughout the hallways to visit all the other kids.
He had a blast!!
All in all he had a good day compared with the last two weeks. And Lori
& Greg are SO relieved to be going home! When they get home the first
thing they'll tackle is the Christmas Tree as they promised Ryan that
as soon as they get home they'll start decorating for Christmas.
They, among all of us, certainly deserve and NEED to enjoy
a little Christmas
THEY WENT HOME TODAY!!
Ryan was discharged at 1pm today
and finally got some fresh air!! Per Lori & Greg's promise to Ryan
(from day 1 that he was in the hospital), they immediately headed over
to Toys R Us for some much deserved "toy pampering"!!
cell counts are all the way up to almost 7,000 (the highest they've been
since he was first diagnosed) due to the Nutripein shots he's been getting
(due to the fever and VERY low cell counts he had).
Today they plan on decorating their Christmas tree at home and attending
the holiday party at the hospital tonight. Again, we're all so, so happy
they get to enjoy some Christmas
TOUCH HERE to go to the newer entries
are OLDER ENTRIES...before they had their surprise hospital visit...
Friday-Sunday (11-21 to 11-23)
Our first "neutropenic weekend" was rather uneventful. Since
Ryan can have very little contact with others, he was stuck with us as
his playmates in the house - although much better than being stuck with
us in the hospital room!
The most successful adventure was our road trip to the car wash. Who would
know it could be so much fun! Ryan also enjoys playing out front with
his dad when his energy level is high. The fresh air is great for anyone
- and rejuvenates the mind and body.
We continue to fight the never ending battle against the physical and
psychological side effects of cancer treatment. The steroids present some
of the hardest challenges. To see sweet Ryan lose all control over his
temper and feel so much anger is heart wrenching. But once the episode
is over, his smile is worth a trillion dollars.
NOVEMBER 2003 Entries
A pleasant and fairly uneventful day. Again, I let some family members
visit in shifts. Ryan was so pleased - again - not to just have us to
entertain him. In about an hour from now, Ryan's best friend will be coming
by for a short visit. One of the hardest things since we have started
this journey has been to deprive Ryan of his contact with Benjamin. This
is his best buddy. The guy who is more like a brother to him than a friend.
One of my favorite qualities of Benjamin since Ryan's diagnosis is that
he marches in and says, "hey, are you better? what's that bandaid?
why do you have that tube attached to you?" He is not intimidated
or frightened by the situation, and he is so inquisitive - for the first
time someone is directing the conversation about Ryan to Ryan. It gives
Ryan a chance to be empowered. They then run around like 3 year olds and
play to their heart's content. They also get into their typical brotherly
spats over silly things like who gets to play with this blue power ranger
- all of which make Ryan feel like a regular kid. I look forward to the
visit this evening and leave you on that note.
A good day overall. Please continue to keep us in your prayers.
That brings me to Thanksgiving. Karen Kelly had made
a full bird for us along with the fixins'. We had an opportunity to sit
down (we being Greg and I because Ryan was not prepared to sit at the
table after waking from his nap under the influence of the Hulk) and have
a Thanksgiving dinner. I found a lot to be thankful for. I dare say more
than I had in many other years.
The words of encouragement we have received by e-mail have been tremendous.
The few moments I steal with friends on the phone or in person have showed
me the true meaning of friends and family as many of you surpassed the
level of friendship and entered the world of family. The love and support
from immediate family has been amazing.
My sister Lisa aches to be with me - but what she may not realize is that
she has provided me great comfort in knowing that she is winning her battle
in her current fight against breast cancer as she finished her last chemotherapy
this week. Amy and Krista (my sisters) would and have changed their plans
at the drop of a hat to help us, cheer us up, be Ryan's playmates, etc.
Art (Krista's significant other) actually dressed up like Blue (from Blue's
Clues) and came to the hospital to make Ryan smile - and it certainly
worked (Krista almost had him convinced to dress like a power ranger but
I understand the tights were a little too tight in some sensitive areas)!
Ryan thorougly enjoys the company of his cousin Daniel and his uncle Dave.
My Oma (mother-in-law and Ryan's halmony (grandma)) has taken on many
daunting tasks to include our laundry and making special Korean favorite
dishes - and other things that seem to require more energy than I often
have. Her love for Ryan goes unmatched and while she has had to deal with
grieving over his illness, she has pulled through and continues to enrich
Ryan's life and mine and Greg's. Papa (Ryan's grampa) has provided great
entertainment for Ryan by battling him with light sabers and playing The
Simpsons X-Box game. Greg's siblings: Chris, Janelle and Angie (Chris'
wife) are great playmates for Ryan and he loves them dearly.
Michael & Laura Socha are the family that put this website together
and in full force (all 5 of them) have all contributed tremendously to
our happiness and well-being. Barb and Mark have been willing to sell
their souls (although I think Mark may have already done that for a 6-pack
in college) to make life easier for us. Michelle and Brian continue to
give support and love that may make their hearts burst - Michelle continues
to try to get me out of the house and Brian has the admirable position
of being a fireman with a huge heart.
My little Lisa is a rock on which I stand - whether she is with me or
not - I know she is solid and beneath me. My boss, Daniel, is hands-down
the most fabulous individual to work for and to work with. I have always
thought this and I have gone so far as to tell him on prior occasions.
If he could ever really understand what I mean, I do not know - but his
love and support is unwavering and for that I am forever greatful. Jackie,
Ryan's old sitter (often referred to as the daytime mom), has provided
us with great comfort by her kind offers to help with Ryan and "Anakin".
And Janeen cheerfully arrived from Richmond for several days to chauffer
me to and from the hospital.
I know Greg has many friends who have shown him tremendous support and
love - and have risen up to meet the challenge - Michael (of course),
Albert, Rick, Joe, Lou, Mark, etc.
I have also acquired a guardian angel as well - by the name of Kim Gumabay.
She is the woman who has fought and continues to fight this battle for
her son along with her husband Albert. I do not have to learn the hard
lessons she had to learn - she unselfishly shares them with me to help
me avoid the emotional and other pitfalls experienced by so many before
It goes without saying that Mary Pat, Rachel, Nancy (and ALL of Nancy's
family), Robin, Darci, Chris (yes, you O'Connell), the Wachter and Larkin
clans, Colleen, Jim, Karen, Andrea, Sarah, Ann Loughlin, Michael's family
(the extended Socha family who have let Onyx - our 110 lb. black lab -
stay for an extended vacation at their house) and so many more that I
can not begin to list have contributed so significantly to our happiness,
well-being and success thus far. Can you even imagine the financial support
and time and energy by everyone - to include the donations of time and
gifts on the day of our return from the hospital.
At times I feel alone - it's me and Greg against the world fighting for
Ryan. And then someone e-mails or leaves a message or does some other
extremely kind or generous thing, and I realize - we are not alone at
all. I then feel more empowered and able to face any challenge.
I go through this list because it makes me feel better - for all of you
to know that you are the reason that yesterday I realized I have a lot
to be thankful for.
great! In fact, I'd say he did better than I. The anticipation of the
day was worse than the day. We started off rocky, but in the end - my
little Jedi knight did fantastic.
Per Ryan's request, he did not want any Teenage Mutant Ninja Turtle swords
to go into his tubie w/ his medicine. He only wanted Star Wars guys and
their light sabers. I promptly informed the nurse of this when we got
To explain: In order to make Ryan a part of this and to inform him about
what was going on in the beginning, we told him that there were mean guys
inside of him that would make him really sick if we didn't get rid of
them. We told him that he is going to have a "tubie" placed
in his chest so that we can put medicine in it to get rid of the mean
guys. We explained that what was so great about the "tubie"
is that he will not have to get the dreaded "pokies". "Pokies"
- as you can probably guess - are when they put the needle in his arm
to take blood or when they give him shots or put an IV in his arm. It
was a disaster with an IV in his arm. The nurses had a hard time finding
a vein and had to poke him several times before getting it finally in.
Then we learned that he is very sensitive and everytime something was
put into his IV or when his fluids got low and he got a new bag, he would
feel the surge. His veins were so little and fragile that it would burn
tremendously. We learned that putting hot pads on them helped a lot -
and as it turns out there was a medical reason this helped as well - the
heat widened his veins. Then, we would put bandaids on it - because, of
course, everything feels better once a bandaid is on it. We then told
Ryan that we were getting millions and millions of tiny light sabers and
Ninja swords and power ranger weapons to go into his tubie with the medicine
so they could fight the bad guys.
He now has specific requests as to which guys and what weapons should
go into his tubie. This week he got Adriamycin (the one the doctor introduced
to us as "this is the one we hate to tell parents we are going to
give their child" b/c of the effects on the heart muscle). Anyway,
it is bright orange and turns his urine orange. Much to Ryan's delight,
when he sees the orange coming out of him, he says "Darth Vader just
got the mean guys out!" As it turns out, Darth Vader's light saber
The Treatment on Wednesday:
As you all know, we had a big day at the doctor's office on Wednesday.
It was a little shaky at first because his tubie was not working. They
need to take blood out from the tubie to check counts. None would come
out. They also could not administer a few of the chemotherapy drugs without
the tubie working. We were given a choice to proceed with the spinal tap
and the injection of one of the chemos into his spinal fluid by giving
him an IV in his arm. That would allow them to administer the sleeping
medicine through the IV. If not, we were likely to go to the hospital
on Thanksgiving to do the spinal tap. Since we were first admitted on
Halloween, Greg and I were fully prepared to be admitted every holiday,
so we opted against the IV in the arm. If we had to be in the hospital
on Thanksgiving, so be it.
In the meantime, they tried every trick to get the central line ("tubie")
working. The guesses as to the problem were endless. One likely problem
was a blood clot. The line could have been crimped along the line or it
could have been sucking up against a muscle. The only way to really know
was to go to the hospital and do a dye study. Before sending us off, they
put a medicine into the line that would dissolve clots. It had to sit
for almost an hour. After it was done, the line worked and they were able
to get blood. We therefore avoided the trip that day to the hospital for
the dye study and avoided the trip on Thanksgiving for the spinal tap!!!
I was especially happy about the latter because he can not have anything
to eat or drink from 5 a.m. until the spinal tap is done. Since we were
already starving and poor child on Wednesday, I hated to have to do it
again on Thursday.
Once we got rolling, things went smoothly. I was never overly concerned
about the administration of the drugs. It's the after-affects that I dread.
The major one for Ryan is the nausea / vomiting after anesthesia and after
chemotherapy. Ever prior time after the surgeries and after each administration
of chemotherapy, he has gotten sick that day and the 2 days afterwards.
The other nasty side effects don't take place until several days or weeks.
The immediate is the vomiting.
Well, I am thrilled to tell you that we seemed to have beaten it this
time!! The doctor gave him a medicine through his tubie for anti-nausea
and this time it was a kind that lasts longer. Then, for the first time,
I had a drug which I could give him orally once we got home and every
4 hours thereafter for the next day to prevent nausea and vomiting. It
worked. I think it was a miracle. I hope and pray we can pull this off
again. It is very sad to feed your child and see him then have it all
come back up. He ends up associating that particular food with vomiting
and that item is eliminated from his menu. Also, his little body just
shudders and I know how much he needs that nurishment. So, greatfully,
we won that battle this time around!
His counts on Wednesday were still on the low side at 1,000 but not considered
neutropenic. As a result, on Thanksgiving, we let (yes, I am the keeper
of the gates) a few family members stop by in shifts. He was elated to
see other faces as he had gotten very sick of seeing me. I was fairly
low on his popularity list by then.
Today we had a doctor's appointment to check Ryan's blood counts. The
purpose was primarily to determine if his counts were high enough to proceed
with chemotherapy on Wednesday. Although his counts continue to be low
(300 on the scale I mentioned last e-mail - up from 100 on Thursday),
the trend was going up so we got the green light for Wednesday's treatment.
I can't say we're looking forward to it, but are certainly greatful that
his body is holding up.
The doctor was most concerned about his weight loss. They do not want
him to lose more than 10% of his body weight. Since he started at 30 pounds,
he only had 3 to give! He weighed 28 pounds on Monday. We need to fatten
him up. The trick is that his menu is so limited due to the mouth sores.
Our shortened menu has gotten a little shorter since not only do the ingredients
in foods affect him, but the consistency does as well. He can't eat things
that are hard since they rub and smash against the sores.
We have developed some strategies but are always looking for more. Any
suggestions are welcome - we will try anything! Unfortunately, Chemo makes
chocolate taste mettalic - otherwise we could dig into the mounds of Halloween
candy we never gave out due to our admission to the hospital on that day.
I have made a cheerios necklace, bought lots of ice cream, and told him
that Pediasure was the juice that monkeys drink. The monkeys-thing was
amusing to him but not a big sales point - it was once I told him that
I didn't want him to drink much because it made him burp and "bongu"
that he really started to drink it!
Ryan has also maintained his sweet and tender humor and as a result, has
been able to keep our spirits up.
Overall, Monday was a very good day. He was engaging with the staff at
the doctor's office and much to my surprise - a willing participant -
even helping push some of the medicine in through his tubie! It amazes
me how fast he has adjusted to so many new things happening to him. Although
he may have rough times with the small tasks again, they are lessening
over time - and for that we are very thankful. Several of the side effects
are starting to subside (right before we start all over again, of course).
On Monday, he ate better than the last few days because the mouth sores
are going down.
The week in review:
What to expect in the next few days:
Tuesday should be a fabulous day and we will play, play, play.
Most importantly, he needs to eat fattening foods. His hair is about 75%
gone and, as I predicted, he is as adorable as ever without it!
Wednesday will be a challenge. We get to the doctor's
office at 9 a.m. to start treatment. He will be put under for a spinal
tap and to inject chemo into the spinal fluid. Anesthesia makes Ryan quite
nauseous and eliminates rich, fattening foods in his diet until it wears
off. He will also receive 2 other chemotherapies intraveneously and we
will continue to give him his steroids. One of the therapies is the one
that is dangerous to his heart so we will be monitoring his heart closely.
That is also the same one that will cause the sores to develop in his
mouth and potentially other areas over the next couple weeks. The other
chemo done by IV is the one that often causes constipation and weakness
in the extremeties. His legs have become weaker over the last couple weeks
which has been painful for me to watch since he loves to run and jump.
So far, he has managed to continue to fight light saber battles, become
a Power Ranger warrior, and spin Spiderman webs - even if laboring a little
harder to do so.
Essentially all of the drugs he will get on Wednesday will reduce his
white blood cell, red blood cell, and platelet counts. All of which increase
his risk to infections. He will receive another drug intraveneously to
prophylatically reduce the chances of contracting pneumonia - a form that
exists in all of us but does not raise its ugly head unless the immune
system is not functioning. The chemotherapy will also cause nausea and
vomiting for a few days following the treatment.
We expect to spend all day at the doctor's office on Wednesday and then
most of the rest of the day and night in his room.
Thursday will probably be spent in his room as well. Greg and
I are marginally aware that it is Thanksgiving that day. But - How better
to spend the day than being in close quarters with your family and helping
one member who is in need? While our celebration may not be traditional,
it will certainly embody the spirit of Thanksgiving.
As you can imagine, we will not be entertaining many phone calls or visitors
- just pure and simple family time. Please send us your good thoughts
by e-mail or in your prayers.
Enjoy your families on this Thanksgiving day and recognize what a blessing
they all are. We will do the same.
Lori and Greg
From Lori Holt...
I sit here at the computer wondering how to begin and finding it unreal
that I am in this position. It goes without saying that much of our strength
has been drawn off of all of you. I have told several people that I have
defined myself as being the luckiest unlucky person in the world. To have
such tremendous support and love from family and friends is a complete
blessing. The joy it brings me is in complete contradiction with my fears
and sorrow over Ryan's condition. I have committed to focusing on one
day at a time. The three of us will need all of you throughout the next
At times, we may seem distant. It is not because your support and love
is going unnoticed. Ryan's condition will dictate much of our contact
with you all.
Let me start
with the current update:
Yesterday Ryan had chemotherapy. We are in the midst of the "induction"
phase. In Ryan's case, it is a 29 day cycle. This is the time period when
they blast chemo into the patient. During the next phase, chemotherapy
will not be administered as often. The next phase is called the "maintenance"
phase. In our case, it will be comprised of 15 cycles. The time period
between each cycle is 3 weeks - which may change if Ryan's health will
not permit that particular session to start on time.
In the induction
phase, he will receive chemo every week. In fact, due to the holidays,
his schedule was bumped up by a couple days so the time between the last
chemo and yesterday's was 5 days. Seems bizarre that my child's health
revolves around the holidays - I, of course, think the whole
world should stop while we're fighting this battle for Ryan Victor Holt!
The doctor's office is closed on Saturdays and for Thanksgiving and the
day after. Therefore, we needed to rearrange his treatments so that the
next one falls on the day before Thanksgiving. I realized that although
I am not pleased that he has less recovery time between treatments, it
is important for all those in the outside world to share time with their
families on weekends and the holidays. The doctors are certainly not interested
in doing anything to negatively affect Ryan's health and precautions will
be taken to ensure that he is ready for next Wednesday.
Back to yesterday
(Thurs.): We were at the doctor's office for our first visit. We were
there from about 11 a.m. to 4 p.m. Administering the chemo was probably
30 seconds long! Yet somehow I was pleased when I left the office. We
spent time getting to know the office and staff. Much of the time was
spent in discussing my questions to the nurses and doctor. It is a very
busy office and so we did have quite a bit of family time in the patient
room. But when it was my turn - I got my full turn. The doctor gave me
her undivided attention and entertained the many issues and questions
This, I think, makes it worth the wait every time.
A word you all will come to know as well as I. Ryan is now neutropenic
- as we learned when his blood was drawn yesterday and his blood counts
were calculated. This is our first episode of reaching this dangerously
low condition. It basically means that his ability to fight
infections does not exist. There is a scale used to measure this condition
- the hospital's standard and much literature say that if the count is
below 1,000, you are neutropenic. Dr. Greenberg's standard is that if
you are below 500, you are neutropenic. Ryan's count was 100 yesterday.
This is the
time that we, as parents, must commit to protecting his environment. There
is little we as parents can control - but this is one. Relentless hand
washing and keeping his exposure to others at a minimum seem to be the
best recipe for success - according to literature, the medical
field, and my own expert - Kim Gumabay (who has paved the way for me through
her experience of battling cancer with her son, Ethan - who, by the way,
has completed treatment and is doing well).
The flu -
to you - may last a couple days. Ryan could easily end up in the hospital
for weeks, or worse, it could be fatal. A healthy person with plenty of
while blood cells can combat many viruses and illnesses - not true of
those who are immuno suppressed. He will go in and out of this status
throughout the next year or so.
the chemotherapy well yesterday. However, many of the effects are not
seen for a few days. Some to expect in this week are a hoarse voice, weakness
in the extremeties, constipation, and mouth sours. The particular chemo
he got yesterday does not generally cause nausea and
I came to
realize yesterday that the immediate battle is fighting the side effects
of chemotherapy and drugs - and not the cancer. Of course, without the
drug therapy, the cancer would take over rapidly so it is a necessary
battle. The mouth sores and weakness in his legs has begun from prior
treatments. The weakness in his legs has thus far been minimal, however,
I - against my doctor's advice, being 32 or 33 weeks pregnant (I've lost
count), continue to carry him up stairs when I think he needs help. A
motherly instinct rises up and takes over for the immediate task. But
not fear, I am taking care of myself as well. "Anakin" - as
Ryan calls his baby brother - is doing very well. He likes to let me know
he is around by poking and prodding at me - a welcome reminder!
Ryan is also
going to be sporting a new hair style in next day or so. He is rapidly
losing his hair. While at first I thought this was sad because he will
now look sick, I realized that it simply means the drugs are doing what
they are supposed to be doing. He will be every bit as adorable without
hair as he is with hair. His dad may even follow suit - if Ryan wants
As you all
know, he is on a large dose of steroids currently. We give him the medicine
3 times a day every day during the induction phase. It will slow down
a bit during the maintenance phase but will be given throughout the course
of treatment. The side effects of steriods are also challenging.
The one "joyful" side effect is his desire to eat - many of
you know that he has been a poor eater since birth - he was just too busy
playing to bother to stop and eat. One very challenging aspect of steroid
use is that is alters moods and the child is unable to control his anger.
Greg and I are
learning how to adjust our response to help him through this. While we
want to make sure he understands bad behavior is not tolerated, we recognize
that much of his responses are not in his control at the present time.
Gently holding him and telling him not to hit and telling him we love
him are my current strategies.
It is also very difficult for him to satisfy his hunger. With mouth sores,
he is not interested in eating because everything "stings" his
mouth. Thus far I have found that animal crackers, frozen baby corn and
peas (yes, not heated at all), jello, and plain pasta or rice may be the
staples for the year. Things that are warm, or acidic or things that have
any spice or salt on them do not work. This eliminates a great deal of
items but we are constantly trying to add to our list. I am sure we will
soon have a decent list of things that he will enjoy.
When he is
up - he's up! Despite all of these challenges, he continues to be a trooper.
He loves to laugh and giggle and make us do the same. He still finds plenty
of strength and energy to challenge his dad to a Jedi light saber battle
(Star Wars for some of you less enlightened folks). He
is figuring out the routine as well. Last night, before bed - he said
to me, "Mom, you forgot to flush my tubbie" - a task we need
to do twice a day and I had only done it once. He doesn't particularly
care for me to do it, but he requires me to follow the rules!
When visitors come, he now will comment if they have not washed their
hands at the door. Some of you may know - but when the friendly invasion
occurred last Sunday (with all the fabulous worker bees making my house
immaculate and kid friendly) - there were 2 stations put up at each door
to the outside. (This happens to be my favorite addition.) On the shelf
next to the door is antibacterial soap/hand sanitizer. What a clever idea.
It makes it easy for me to ask guests to come in with clean hands. And
if I don't remind you, rest assured that Ryan will!!
And it wouldn't be fair for me not to tell you all that he is enjoying
his X-Box. Something that mom had previously been against - but times
change. It is a nice diversion for him when he doesn't have much energy
or when he is sick of me harrassing him about something!
is a doozey with his chemotherapy. I won't go into great detail right
now, but suffice it to say - that we will make the best of every good
moment until then - and even then!
Continue to keep us in your prayers.
is thriving being at home. One look at him and you wouldn't know what
he's been through. He's active, happy, eating, and loving the visits from
his family and best play buddie the last couple of days. At night, of
course, he slows down considerably and gets tired and just wants to rest.
But, he loves his new room and all the new fun stuff he's received over
the last couple of weeks.
Lori & Greg are also VERY, VERY happy to be home. They are at the
beginning stages of establishing a routine with Ryan and his oral medications.
Tomorrow (Wed.) they will be doing their first "at home" dressing
change on Ryan's tubie. We'll let you know how that goes.
They are really enjoying the dinners that friends and family have been
bringing to them and send their thanks to everyone for their thoughtfulness.
Tuesday night, for instance, they had roasted chicken, eggplant parmesan,
caesar salad, spinach salad with poppy dressing, and an apple dessert.
If you'd like to help out with dinners in December/January visit THIS
LINK to sign up.
Tomorrow they will be going to the doctors for chemo and for a check up
(blood work, etc.). Also, starting tomorrow, Greg & Lori
will be updating these web entries!! You finally get to
hear it straight from the horse's mouth. I know everyone is anxious to
read their story in their own words on the website. They will be updating
us every few days from here on out. Keep checking back. Next update will
be tomorrow night (Thurs.). I've enjoyed keeping everyone informed and
am SO happy that it has helped. Take care everyone.
To Ryan, Lori & Greg.... don't EVER, EVER forget that you are SURROUNDED
by family and friends who LOVE you guys and will be there WHENEVER, WHEREVER,
and HOWEVER you need us. We're in it for the longhaul with you.
"Help at the House" event went INCREDIBLY well!! We accomplished
SO MUCH in a matter of hours due to the great turnout. We had over 18
people there helping get the house ready for Ryan's return home. Check
back in the next couple of days for PICTURES
of everyone pitching in and the NAMES of the volunteers.
Some of the projects included:
-Ryan's Room... installing a new, larger
bed (in case he needs company at night), new linens with a fun new comforter,
installing a wall mounted TV with DVD/VHS so he can watch TV/Movies in
bed, new side table with drawers (for supplies), magnetic boards above
his bed to hang pictures of friends & family, and other neat, fun
stuff. His room before was cool too but, we had to get it ready for his
Room... getting it ready for overnight helpers/out of town visitors
to be comfortable (pictures, telephone, floor cabinet).
-Bathrooms, Closets, Misc. upstairs...re-organizing,
cleaning/sanitizing, new shower curtains, clearing shelves for medical
-Kitchen... general cleaning from floor to ceiling, sanitizing
everything in sight, refrigerator cleaned, sanitized and emptied (since
they were at the hospital for almost 3 weeks), re-stocking the refrigerator
with fresh food basics (thanks Barb Heider for shopping!!)
-Office... BRAND NEW TV & TV stand (donated by a
friend), sanitizing station installed at the door for visitors, new shoe
-Living Room... new layout (for visitors and to have
a separate space from family areas), new TV & cabinet, new end table
-Foyer... sanitizing station & shoe organizers installed
-Family Room... BRAND NEW carpeting & deluxe pad
donated by L&L Carpet
(a carpet company in Virginia that Bob Ruckle, one of Greg's Fraternity
brothers, works for)..THANK YOU L&L
Carpet!!, BRAND NEW monster TV with XBox and ALL (and we mean ALL)
of the latest games & gadgets you can imagine (all donated by a friend).
Ryan & Greg will do some serious male bonding playing with that system!!
And, inevitably, Lori will get some time to herself!
-Utility Room... BRAND NEW washer & dryer (donated
by friends), complete scrubbing, cleaning & sanitizing of refrigerator
and the entire room where cat used to live.
-Outside... Entire yard was cleared of leaves & Fall
debris, outside porch and all of its contents were washed, cleaned &
-CARPETS... throughout the entire house were cleaned,
treated with MicroBan (an incredible germ killing agent), then Scothgarded
(this was done on Saturday by a professional cleaning company).
-DECORATIONS... lastly we decorated the whole house with 50 helium
baloons, welcome home banners, and Spider Man stuff (Ryan's favorite superhero
(thanks Lisa Barnet for the decorations and for helping bring home tons
of Ryan's stuff from the hospital!!)
Ryan, Lori & Greg came home later that day (around 6pm) to an incredibly
clean, comfortable, and FUN house full of new necessities and comforts,
plus baloons & decorations throughout!!
Needless to say they were overwhelmed and overjoyed at the incredible
things that were done to their house. They are VERY appreciative and feel
VERY loved!! MISSION ACCOMPLISHED!!!
As for Ryan.....he was THRILLED with his new room and
the new video games downstairs. He was filled with energy & excitement
and was, obviously, so happy to be home!!
Side note...Lori told me that when Ryan was leaving the hospital, he was
RUNNING down the hallway to the elevators. He was SO ready to get the
heck out of that place!!
In closing (on their big day)....let's ALL hope and pray that
our love, well wishes, and support help them, in some small way, better
cope and handle the long road ahead with Ryan's fight with cancer.
FIRST THINGS FIRST!!...
They're going home tomorrow afternoon/evening (Sunday)!!! Yeahhhhh!!!
was very active last night (Fri.). He was alert and playing with visitors
who came by to see him. He went to sleep at 10:30pm and didn't wake up
until almost 8:30am!!
Today was a pretty major procedure day for Ryan. Today Ryan received another
spinal tap. Doctor Green, one of his main Oncologists, came in the morning
around 9am and checked him out then introduced some "sleepy juice"
(anesthesia) through Ryan's tubie to prepare him for the spinal tap.
The spinal tap was performed today to check the fluids for the presence
of any cancer cells. Ryan had undergone a spinal tap last week as well.
That test turned up negative, you may recall, for cancer cells. The test
results from this spinal tap will not be available until Monday probably.
Also, chemo drugs were injected into his spinal fluid at the same time
as the spinal tap just in case there are any minute traces of cancer cells.
Ryan has to undergo this spinal treatment once a week for the next six
weeks. Tough stuff to hear but it's critical to ensure that the cancer
does not spread to his spinal fluid which contains life saving stem cells.
Amazing boy he is for putting up with all this crazyness!!!
Ryan started waking up in the early afternoon from his morning procedure.
He was, of course groggy. Later, he was hungry. Very hungry. So he ate
some rice. Unfortunately, due to the anesthesia, it didn't agree with
It seems that Lori & Greg have gotten quite the reputation on the
Oncology wing at Fairfax Hospital. Today the Dr. made a comment about
they've become legendary. They're informed, proactive, inquisitive, and
won't let up if they don't understand something or don't agree with something.
Hmmmm, wonder if the "legal training" is kickin' in a little
bit!! Good for you guys!! We're proud of you both for sticking to your
guns and lettin' them know who's boss!!
is getting quite astute at the medical speak as well. She noticed that
a drug (called Allipurinol) that helps the body remove uric acid (a major
byproduct of the cancer being killed and broken up) was not prescribed
any longer. They wanted to know why since it seemed to them that maybe
it was because there wasn't much uric acid since there weren't many large
cells or tumors left in his body. They were right! He doesn't need the
Allipurinol because there's not much uric acid being produced since there
aren't any large cells or tumors left in his body. Chemo from here on
out is intented to go after the small and microscopic pockets of cancer
that may still be in his body.
continues to take his oral meds (prednosone, a steriod) like a trooper.
Initially when the nurse walks in with it he'll scream NO, NO, NO. Then
the nurse just sets it down (this has become a routine). Then Ryan will
pause for a few seconds then scream out loud....BRING IT NOW! It seems
he doesn't want to look at it, doesn't want to think about it, and doesn't
want to put it off. So, he just sucks it up and takes it. Again, what
some interesting news...Lori & Greg have registered for the "Cord
Blood" program. This program is designed to preserve the blood from
the umbilical cord and placenta from a patient's newborn sibling (Ryan's
brother who's expected to arrive in January). The hope is that there blood
will be a match to supply critical stem cells should Ryan need a bone
marrow transplant. There's a 25-30% chance that a siblings cord blood
will be a match.
Ryan's blood cell counts are up today. That's good news. After his next
round of chemo (today/tomorrow), he'll be nutrapenic (very low white blood
cells - susceptible to getting sick from germs, infections, other peoples
colds, etc.) over the next few days.
received a whole box of essential medical supplies today to take home
with them...sterile gloves, sterile wipes, dressings, and all sorts of
Ryan had a pretty good day couple of days all in all. No major tests or
scans. Just his regular battery of a bazillion chemo drugs. All was going
well until the nurses gave him a dose of a medicine that tasted yucky.
Somebody goofed with the "make it taste good or the little guy will
kick you in the knee" order. Suffice it to say, Greg & Lori were
ticked and cleared up the "issue" so it wouldn't happen again.
Lori, Greg & Hommini (Greg's Mom) were by his side most of the day.
Greg went out to lunch with a friend and promised to bring Ryan back some
chips and dip because Ryan had seen a jar of pringles with a picture of
dip on it. He wanted dip with his chips!
guys left they promised Ryan they would wave to him from the top of the
parking garage, which Ryan can see from his room window. Greg called Ryan
from his cell phone and they talked while Greg was on the "roof".
Ryan thought that was pretty cool.
returned he not only brought chips & dip but goodies from the local
"Hostess Outlet". Cupcakes, oatmeal cookies, fruit pies, etc.
Hey, everyone needs some sweet stuff to help make the hospital food go
down. Ryan enjoyed his treats that night.
later for more information about the "changing of the dressing"
that was to happen at night. Hopefully, that went well. Couldn't get the
details from Lori when I called to get the morning update because it was
medicine time. Good luck Lori. BE STRONG Ryan...let the medicine go down
and fight the bad guys!!
Ok....update time....medicine went down just fine and stayed down. He
was definitely VERY suspicious of getting the yucky taste again. He was
quite vocal about his not wanting to take the medicine after the last
yucky tasting batch he had. It was a bit of a struggle but, AS USUAL,
he came through like a trooper and took his medicine. MUCH better tasting
this time. Thank Goodness!!
As far as
the dressing change goes (which is the sterile LARGE "band-aid"
stuff, for lack of a better description, that covers Ryan's "tubie")...that's
another story. Let's just say that Lori is wearing a big "patch"
band-aid right now so that Ryan can pull it off of her soon like the nurses
made them pull it off of him. We all know how pulling band-aids off of
children is......THEY HATE IT!! Imagine a band-aid the size of a postcard
having to be pulled off! That's where we'll leave it.
NEWS!!!...Doctors say there's a VERY good chance Ryan, Lori &
Greg will be going home on Sunday. Yes, THIS Sunday (11/16). Ryan has
been responding so well to the treatments that there's no need to stay
kooked up in the hospital room any longer. HOORAY!!!
They'll probably go home later in the day but stop off at Greg's parents
for dinner. Which, of course, gives us the time to do what we're doing
at their house on Sunday! E-mail
us at this link if you want directions to their house to help out
for a couple of hours on Sunday (11/16).
considerable time with the nurses on Friday going over the oral medicines
that they have to administer at home, discharge & follow up instructions,
outpatient chemo details, etc., etc., etc. They've got a binder about
6" thick already of hospital papers, information, instructions, notes,
names, numbers, drug information, etc., etc., etc.
As it looks
now Ryan will be going back to Fairfax Hospital every Saturday for outpatient
chemo treatments and has to go to the doctor's office three times per
week for blood tests. The blood tests will measure his white blood cell
counts to ensure he is at the proper levels so that the Saturday treatments
can be adjusted accordingly. We'll let you know right here if/when they'll
need any support with this routine. Keep checking back.
Ryan & Greg had a rough night's sleep last night. And Lori only got
about 4-5 hours herself. Ryan was up every 45 minutes. Can't figure out
why exactly but we're going with the excuse that all the sugar and caffeine
he was getting yesterday to try and help make the medicine go down might
be the culprit.
a Gallium scan today. Basically the Gallium scan creates a "Baseline"
for the Chemo treatments. He had an MRI at the very beginning when he
was initially in the hospital also which showed the initial presence of
Lymphs (nodules). The Gallium scan is similar to a CAT Scan in that he
was inserted into a big tube. In a Gallium scan though a camera slowly
moves down his body and takes "pictures" of his whole body producing
a full body image. Unfortunately, there is no sedation for the patient
so the patient has to lie completely still for 3 sessions of 20 minutes
each and 1 session of 10 minutes. VERY HARD for anyone let alone a 3 1/2
Ryan DID FANTASTIC!! He layed very still for each session.
Amazing! Though he was VERY vocal about his dislike of the whole process.
No problem big guy, you let out your frustrations any way you want. We're
proud of you for doing so well!!
It was equally as hard for Lori & Greg watching him go through all
this craziness!! We can't imagine the feeling. We love you guys.
of the scan, however, may have been worth it....they indicate that he
is responding very well to the initial treatments he has received thus
far!! The scan came back as a NEGATIVE meaning that no lymphs (cancer
nodes) are showing up on the scan. The doctor's exact words were "Very
unimpressive".....meaning that the scan for nodes/lymphs results
was not impressive....translation - VERY GOOD - because the presence of
nodes would have caused an "impressive" reaction. Doctors speak
in such strange terms sometimes.
Now, is that
a predictor of how he'll respond to treatments in the future or how fast
he'll beat this thing. No. The Dr's, ever cautious, tell them to take
joy in each and every triumph but to stay grounded and realize that it
does not predict future success.
But it's still good news for today!! We'll take the good news!!!
Oh, and Ryan,
once again (for the 2nd straight day in a row) took his oral meds just
fine using the new medicine (better tasting) and the Strawberry Hershey's
how he sleeps tonight.... Good night Ryan. Good night Lori. Good night
WE LOVE YOU ALL VERY, VERY MUCH.
Today was day 4 of cycle #1. Cycles are approx. 28 days
each. Ryan's current chemo treatment is following a new study that was
just released by the National Oncology Group of specialists around the
country. This study showed better results by, among other things, adding
a new drug to the chemo mix. Ryan is getting the benefit of the latest
science and cancer treatments due to this study and it's positive results.
was very weak and tired most of the day due to the very low levels of
blood cells in his system. He didn’t want to get out of bed or eat
or drink for most of the day.
Ryan received red blood cells, by transfusion, later in the day. That
transfusion had a very positive effect on his energy levels very quickly.
He began eating, drinking, and was alert and playful as a result of the
JUST A REMINDER that we need you to donate blood in Ryan’s
name (called a REPLACEMENT donation) as soon as possible! Follow THIS
LINK for information on where you can donate blood.
Many of the
cancer tumors in Ryan's body have already started “melting”
due to the chemo (as the Dr.’s expected). It’s amazing how
many different kinds of drugs he’s receiving. Some drugs are, obviously,
to kill the cancer but some are being given to counteract the side effects
that these drugs have on his body. It’s amazing to look at his little
body and imagine how he’s putting up with it. He’s toughing
it out, that’s for sure!
that today was very frustrating for him. The oral medicine they have to
give to Ryan is nasty stuff. The nurse gave Lori & Greg a little taste
on their finger and it was DISGUSTING. The very bitter taste lasted in
their mouth for over an hour despite trying to get rid of it with soda,
chocolate, whatever. Ryan was being given 100 times what they tasted on
their finger. NO WONDER HE WAS THROWING UP SO MUCH!!
asking questions, demanding alternatives, and finally getting a prescription
and driving to the local pharmacy down the street (Greg had to)!!!, they
were able to get a MUCH better tasting alternative form of the medicine.
Also, Greg picked up some strawberry flavored Hershey's syrup and mixed
it with the medicine. IT WORKED GREAT! He took 3 drugs orally with no
problems and he kept it down!!!
the hospital have the better tasting drug you ask?? It would have taken
them 48 hours to get it because it's not something they generally stock.
Primarily (we all believe) because the better tasting one is more expensive.
Yes, sad but true - especially since it's a PEDIATRIC wing of the Oncology
Dept. Frustrating. But, they found a GREAT solution.
Way to go Lori & Greg!!!!!!!!! Way to go Ryan!!!!!!!!!!!!
Monday Nov. 10th...
Ryan woke up with a lot of energy this morning and a very healthy
apetite again. He's continuing his chemo treatment through his "tubie"
as well as taking oral medications. He definitely does NOT like the oral
medications so, it's been a real challenge to keep that medicine down.
Banana flavoring seemed to help today as he kept the medicine down.
Ryan is heading
into a phase of the chemo that severely depletes his disease fighting
blood cell counts. In particular his white blood cells are at an all time
low as of Monday night. This makes visits from friends and family especially
difficult since his immune system is extremely vulnerable and any introduction
of germs and/or common viruses pose a danger to his health.
Lori ask that if any friends want to visit Ryan in the hospital, please
call ahead as they need to drastically limit Ryan's contact with visitors.
Visitors will have to wear masks and gloves. This will be standard protocol
for a while. Thanks!
second day on Chemo (Sunday the 9th), however, was MUCH, MUCH
better. One of the drugs in the initial chemo battery is Steriods, which
makes you very, very hungry. Ryan was eating "like a little piggie"
on Sunday and was feeling great!
was pretty good too. Ryan slept almost 10 hours thru the night. Ryan's
room is filled with lots of toys.
Ryan's best friend visited this morning and they played in his
room for several hours. They had a GREAT time playing Power Rangers &
Star Wars. They ate snacks together, watched movies in bed, and went for
lots of "up & down" rides on the automatic bed! Ryan had
a lot of FUN!!
have been visiting & staying in his room for support most of the day
days leading up to today. Ryan has never been alone.
first night on Chemo was rough as he began experiencing some
of the classic side effects including fever and severe nausea.