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September 8, 2005

I feel like I may be talking to myself - which is fine - but also sad. Even though my journal has been a great tool for me, I enjoyed knowing that I had so many of you out there routing for us and praying for us. It felt good. I now feel like I'm in a lecture hall speaking to an empty room. I'm afraid it represents the new phase we are entering.

The Celebration
The funeral and celebration of Ryan's life was fantastic. A strange word to use when talking about a funeral for my sweet 5 year old son. It was the celebration I wanted it to be.

One friend told me that when she saw Greg and I proceed down the aisle behind the casket at the start of the service, a piece of her died forever - and that after my Eulogy, a piece of her was reborn. I guess that means I did my job as Ryan's mom.

To me, the most beautiful moments were during Molly Sinnott's solos. She sang Testify to Love (Wynonna Judd) and You'll Be in My Heart (Phil Collins). I truly think that she sang them better than the original artists. She did it without any accompaniment. The symbolism of it all is what overwhelmed me - a tribute by a child for a child. She was so poised and brave - just like Ry during his battle. Molly contacted me to ask if she could sing at his service - and said she would be honored to do so. No words could have made a better tribute.

That's not to say that I didn't try. I spoke at length about Ry, his battle, his courage, and the tremendous support we've had along the way. Greg and I are committed to continue the fight against childhood cancer.

I told everyone I had a lot to say and wanted to say it all because I wouldn't have an opportunity to reconvene everyone. I had my captive audience and I attempted to say it all. But I realize now that I have so much more to say. There will never be enough time.


More about the Ry-guy
I want to tell you how he loved having his feet massaged and his back scratched. About 12 hours before he died he sighed in delight when I scratched his back and he asked if I could do it forever. And I wanted to do it forever. Lisa Barnett came to visit that night and he wanted her to rub his belly. When it was getting late and he was sleepy, she left his side to turn the music down and he said, "Ohhhh belly rubber - Oh Lisa." She took the cue and made her way back to him to continue the belly rub.

I didn't tell you that when you slept next to him, he'd reach out for you to hold your hand. And I forgot to mention that he loved to have a pink popsicle when he had to take Niphetapine at the clinic for high blood pressure - and that it was his nurse Caroline who discovered it and made it a ritual. I never told you that he went to a pre-school type daycare for a few months before he was diagnosed and he hated it. He would wake up in the morning and say, "Where am I going?" If it was to hominy's house, he'd rejoice. If it was school, I'd smile and say in my happiest voice - "to school - it'll be so much fun." But he was always sad that he had to go. He was so good. He always behaved well - in school and at home. He was a rule follower. But the classroom setting was too rigid. He missed his buddies at Jackie's. He liked the comfort of a home. He made friends at school - even a best buddy named Dillon and the two were constantly side by side - and all the girls loved him - I think they saw the sweetness in him. Many days his Halmony would pick him up - and sometimes they would both embrace and cry.

Each morning I'd try to soften the blow by making him his favorite breakfast - tubby toast. We adopted the name from the Teletubbies and I made my version of their toast. It was a circle that I cut from the insides of a piece of toasted bread with a smiley face made out of cinnamon sugar on it. I had moderate success in getting him to eat it which - with his appetite - was phenomenal. Halmony has reminisced lately about how he told her he loved Korean food. And he did. But we would be thrilled if he ate 2 tablespoons worth of food - before and after his diagnosis with cancer.

I didn't tell you about the picture he drew when he was 2 at Jackie's. Like most kids that age, it was a bunch of scribbles on a page. Jackie asked him to describe it so she could write down what it was on the page. He told her, "Tiger pooping in the grass." Two of his favorite topics: tigers and pooping. I didn't mention his fondness for video games - and that he liked his dad to play them while he did something else nearby. Ry would entertain himself with his Pokemon figures or some other little figures and use his imagination to make them come alive. Simultaneously, he wanted Greg to play Pac Man or Star Wars Legos - or other games on the X-box (a gift from everyone out there when he was first diagnosed). I can't tell you how many hours Greg and Ryan and Chris played Pac Man. He was at an age that the controls were a little complicated but he liked to have it on. I thought I'd be a mom who discouraged video games. I realized he enjoyed them and he forgot about the cancer world with them on. I made peace with game systems.

His quirky little personality mirrored a few of my more neurotic qualities. He had to have socks with stickee stuff on the bottom - thank goodness for Old Navy - and they had to be put on so the letters lined up perfectly on the bottom of this foot - and that he strongly preferred the light blue or red socks. He loved, loved, loved white cloth diapers which he held on to when he slept. But not just any cloth diaper. It had to be the kind with the extra padding in the middle. And it had to have a tight weave. It was pretty hairy for a while when I couldn't tell the difference and he would say, "not my favorite" over and over until I got it right. He would clutch them in his hands unless they were already occupied with a mini light saber or Pokemon, Digimon or Yu Gi Oh figures.

At Duke, we had a computer in Ryan's room. Directly next to it was a Pokemon poster with a picture of each Pokemon. Ryan circled all the guys he didn't have. On many days and nights he would surf e-bay looking for some of the ones he didn't have. If he found it, we would print a picture out and he would sleep with that picture for days. If he won the bid on a Pokemon he didn't have, we'd have it for "power" and he would do those laps for it. Then he would sleep with that Pokemon for days. And the picture on the poster was highlighted to represent that he now has that Pokemon in his family.

I'd often arrive at Ry's room on 5200 to find Greg sitting on a folding chair with Ry on his lap in front of the computer. Besides surfing for Pokemon, they were regularly listening to music. Sometimes popular hip hop but even more often fun kids tunes like from the BackYardigans. He loved the Secret Agent Man song. He and Greg would sing it and chair dance. They were sometimes in sync like they were one person.

In recent months, Ry would sit on Greg's lap on a comfy recliner at the clinic for hours while Greg played X-box. I remember sometimes when Ry would fall asleep on Greg and Greg would ignore the fact that he needed to get up because his legs were falling asleep or he had to go to the bathroom. Their favorite X-box gave of late was Halo. Ryan would often pick up the second controller and wander the galaxy looking for aliens to destroy. I think he had a parallel with the game with the bad guys in him. And he fought them with a vengeance.

He was never violent at home - he never hit or did anything that would hurt anyone. He was gentle and loving. If he heard a young child crying at the clinic, he would say, "Ohh, poor baby - he's getting a pokie." He played with his light sabers responsibly - he only hit "stick to stick."

There's so much more. He loved play doh. He loved Power Ranger and Star Wars legos. He enjoyed squishy animals like snakes and frogs. The zoo was an all time favorite place to go and he went in recent months with his brother. I could go on and on.


Love and support
At the celebration, there were other superheros in attendance. They are cancer patients and cancer survivors. They include current cancer patients from Ryan's clinic: Chassity (16, currently battling neuroblastoma), James (16 or 17, currently in treatment for a type of cancer), Michael Bean (about 14, just finished treatment for rhabdomyosarcoma). They also include cancer survivors: Tim Quick, Wendy Sall, Mike Gallagher, Amy (DiGiosia) Speed, Lisa (DiGiosia) Speed, and surely many others.

There were so many friends and supporters who came to share in the celebration with our family, including quite a few nurses and staff from the clinic, Dr. Horn, nurses from the hospital and child life staff from the hospital. Tori, Ryan's best buddy from the Duke bone marrow program, traveled from Durham. We had friends fly in from Texas, California, Utah, Kansas, Chicago, Virginia Beach, North Carolina, Georgia, Pennsylvania and other parts around the country. Our dear friends the Fontanillas and Gumabays drove home for the day with all of their children from vacation. Ryan's (and now Evan's) day care provider, Jackie, flew in from Florida during the middle of her vacation. Oma's (Greg's mom) boss flew in from parts unknown. My longest and dear friend Amy came along with her parents.

Countless high school friends came - some of whom I have kept in touch with and many whom I have not had much direct communication with during the last 20 years. There were college friends, law school friends, parents of children in treatment, neighbors, friends of my and Greg's family - all at the celebration. My boss closed the office down and everyone attended from beginning to end. There was a large contingent of Stafford Sheriff's Office members and Fairfax County police department. Greg's bosses and colleagues attended the celebration along with several judges. And there were internet supporters who came as well.

Many wore red - a red tie, a red shirt, a red suit, a red scarf. Red was Ry's favorite color. The bicyclist clubs around the country that were involved in the fundraisers for Ry wore red in all parts of the country to honor Ryan. Judge Bass, a Stafford County judge, donned his red tie.

All of this love and support for my Ryan. All for a 5 year old boy. All to honor his short but distinguished life.


Death
I never told you how or why he died. It's not definitive yet, but we do know some things. The cause of death listed on his Death Certificate is Congestive Heart Failure with Sepsis secondary to lung problems secondary to lymphoma.

As you know, he was admitted to PICU because there was a large amount of fluid around his heart. His heart functioning was diminished but not entirely bad. It was functioning at around 45% when 50% and up are normal. He had echos and EKGs each day he was in PICU. They were all looking good. There was a tube coming out of his body from the area between the sack around the heart and his heart. There was no additional fluid build up around his heart.

Sepsis is a severe illness caused by overwhelming infection of the bloodstream by toxin-producing bacteria. He had two very serious infections diagnosed about a week before his death. He was on serious antibiotics for these and was asymptomatic other than the night we arrived at Duke when he had a 102 + temperature for several hours. He didn't have any symptoms all the next day prior to getting any antibiotic treatment for them and remained asymptomatic as far as fevers or other typical signs of infection until death. One of the docs told me that Sepsis can occur at any point and once it's on that track sometimes it can't be stopped. The goal in the PICU was to weather the sepsis and support the organs. Because he already has many health issues with cancer and its treatment, he is a very vulnerable patient. It's not as if he was a healthy boy and got sepsis - even then it is a condition that is treated in the ICU and has a high death rate. Ryan's little body was at a huge disadvantage. But no one expected him to die. He had been dealt so many challenges and he always came out on top.

He had a bad fluid retention problem that nagged me for many days. He was having intake but not much output. I wanted attention to it. It was my primary focus from the time we entered into PICU. It was the topic I raised repeatedly with the doctors during that first 24 to 48 hours when I had a bad experience with the staff. By the way, it turns out that there are a ton of excellent professionals and kind, caring people in the PICU. It was an atypical day on the unit with several emergencies and an atypical experience from all accounts. Ryan was treated well and was well cared for during the rest of our short stay.

I told you Lisa Barnett and I were with him late the night before he passed away - each massaging parts of his body. Then he "slept." It wasn't very restful. He was sitting up and his breathing was labored. I slept for maybe an hour and then I got up with a bad feeling. I checked his vital signs and felt him. His limbs were very cold. I sat on his bed while he slept and rubbed his limbs - hoping to make them warm. He was still having no output despite having been given a good deal of fluids and several doses of 2 drugs to get the fluids out (Albumin to pull fluids into the cells and diuretics to make his body pee it out). And the bag was empty. This concerned me greatly. I had the night ICU doctor woken up - Dr. Fetterman - and he cheerfully attended to Ryan. He was aggressive and concerned yet calm. Ryan's blood pressure got lower and lower and his oxygen levels dipped despite being given oxygen support with air in his nose.

It reached a point where Dr. Fetterman said the only safe thing to do was to intubate him. This would mean a machine would do the breathing for him. A position I did not want to be in but knew that it was a life saving measure. It was about 6 a.m. Dr. Perdahl had been called when this was going on to alert her. She arrived at the hospital - even though she was not scheduled to be in the hospital that day. I went to the parents lounge on the Hem/Onc floor to wait for the procedure to be done. It was not too many minutes into it that Dr. Perdahl came in and told me she needed to update me. She said as soon as they intubated him, his heart rate fell. She said it was serious. She said I needed to call Greg.

Greg and I stayed strong. Ryan's heart rate slowed to nearly 0 or stopped about 4 different times. Each time they used life saving methods to try to revive him - CPR and compressions on his chest were able to bring his heart rate back up until it was "stable". At one point he was "stable" for about 45 minutes - and a few minutes before the 45 minute mark Dr. Fetterman said often if they can make it to an hour you've reached the safety zone. He didn't make it to the hour mark and they continued to do life saving measures. The room was full of nurses and doctors and staff. Another echo was done of his heart. The cardiologist was paged and when he got there he examined the picture. He now saw some sort of mass on one of the chambers of the heart. It had not been there the day before. It was most likely a clot or perhaps an infection. It seems like a clot is more likely since he was on heavy antibiotics for the infections that they had discovered more than a week prior. Once his heart rate fell after that one long 45 minute period, it never seemed to recover. Each time they stopped chest compressions, his heart rate dropped.

All told it was 3 hours of hard labor trying to get his heart to work on its own. Dr. Perdahl did what I asked her to do - she let us know when it was not productive to keep up the procedures. She came to us and told us that now it was more for us then for him. We asked them not to do the compressions and other life saving measures next time his heart rate dropped. They honored our request.

Greg and I made our way to the head of the bed and talked gently and sweetly to our beautiful son. Throughout the procedures Ryan made not one sign that he felt any pain. He did not moan or make any kind of movement that indicated he was scared or uncomfortable or in pain. The nurses told us that he could hear. We talked and talked. We told him that he had beaten the bad guys. We told him now he should take a nap - a 1 minute nap - the words we used to tell him to take a nap when he didn't feel like it. He should rest - to think about how good it felt to relax and let go. We told him he would be playing with my mom and dad - if he wasn't already. We told him he'd see Onyx and Frannie. I told him I was the luckiest mommy who ever lived. Greg talked about all his favorite things. We told him we loved him so much. We thanked him for letting us take care of him and for bringing us so much happiness. Greg was nose to nose with him one last time.


The next place
Ryan was buried with many treasures and comfort items. He had his favorite Yu Gi Oh guys in his hand - Skull Dice and Graceful Dice; there was a Pokeball filled with Pokemon; he had glow sticks and marbles; the necklace he got from Adrianna before transplant was around his neck; a Livestrong bracelet on one arm and a Power Ranger morpher on the other; Yoda's lightsaber was in the grasp of the other hand. We always surrounded him in life with the comforts of things that made him happy - and it was no different in death.

The weather was gorgeous. At the start of the motorcade to the burial site, the clouds darkened and it began to lightly rain - as we got closer to the Memorial Park, the clouds parted and beautiful sun rays shined down upon us. The wind kicked up as a Fairfax County police officer sang Wind Beneath My Wings. Ry was laid to rest on top of my mom - sweet, loving, kind Bonnie. We were all comforted at the thought of her holding him in her arms.

The reception was a continuation of a beautiful celebration. The room was decorated with bright colorful balloons with glow sticks attached to the end. There was one balloon for each week of Ryan's life. We had display tables with memorabilia and pictures. A slide show was shown to some of Ryan's favorite tunes: Soak up the Sun, Baby Boy, A Few of My Favorite Things. . .

A fitting celebration for a brave and valiant warrior.

Growing Hope
There have been generous donations for Growing Hope, the foundation that supports the families and kids at the clinic here in Fairfax. The donations have been going to the leader of our support team and I am forwarding them to the clinic. I am really hoping some of you make this your cause and continue to send contributions - maybe yearly or however would best suit you. In the event you take me up on that, I want to list the address for Growing Hope directly. Please put Ryan Holt in the memo of your check. We will be happy to continue to forward the money to the foundation or you can send it to them:

Growing Hope
PO Box 151
Fairfax Station, VA 22039


Helping Us
I want to make sure those of you who donated money for Greg and I to help with our expenses and costs know how much we truly appreciate it - it is beyond kind and I have no appropriate words to thank you.

Grieving
Many people tell me that they are struck by the way I stay strong and many of them wonder if it is the same behind closed doors. I am actually very lucky to have some coping mechanisms that I can only assume I was given at birth. That is not to say I don't ever cry or get very sad. Somehow my body compartmentalizes my emotions. I don't force it to or will it - it just happens. I put all the things that are painful in a box and set it aside. All the things that make me happy and comfort me are then left to fill me up. I also keep focused on tasks at hand. Prior to the memorial service it was all the arrangements that kept me busy. Now I am concentrating on doing some home projects and soaking up Evan.

If you were to see into the lock box, you'd see the pain that rips through a parent who loses a child. There's a lot of unfinished business thoughts - loose ends that will never be tied - like seeing kids go off to their first day of school yet knowing your son will never have that chance. It crops up at times like when you pass the movie theatre under construction and remember the conversation with Ry about going there when it opened - but know that's not going to come to pass. It's thinking about girlfriends and college and sports - that won't be experienced by your sweet child.

There are paralyzing moments when you least expect them that you couldn't have put in the lock box because you hadn't anticipated them. It seems that it is easier to cope when you brace yourself but there are times you are blind sided by the emotions. It's like when I cleaned out the van and saw Ryan's beloved Pokemon book that listed all the stats of each Pokemon - just like a book filled with baseball cards. He knew all of them. The pages were worn. There are stickees on certain pages that he had marked. It's holding the book that he held so many times on his lap and in his hands. It happened when I found the frisbee we got as a free gift at a restaurant we went to in Virginia Beach - remembering only 3 weeks before he was walking on the sand and sitting on the hotel balcony - all things that will only live on in memories. The knot builds in your throat and then you swallow - knowing you must and will carry on - if for no other reason than for the very son you mourn.


The Future
We will survive - as a family and as individuals. There will be pain but we have a lot to live for. We have our work cut out for us if we are to truly honor Ryan's life in our daily living.

We have decided to go to the beach for a few days with Evan before heading back to work. We are anxious to give him some special time and get some of that unconditional love from him.

I plan to occasionally update - mostly because I'm not ready to give it up - and I'm not ready to lose all the emotional support out there. Thank you for walking our journey - I'm only sorry it was too short.

Warm regards,

Lori

August 24, 2005

Ryan Victor DiGiosia Holt passed away today. He fought harder than
any little five year old should have to. We ache deeply but have not
one regret. The joy he brought us is immeasurable.

Greg and I have felt a measure of relief for Ryan today. We believe
my parents came down and showed him the way to heaven.

Warmest regards,
Lori and Greg




August 22, 2005

Ryan is currently in the PICU - the Pediatric Intensive Care Unit.
It's a whole new world to us - one we hoped never to know.

This past week has been grueling to say the least. On Monday the 15th
of August Ryan had transfusions of platelets and his chemo of
Gemcitibine and Veneralabine at the clinic and then it was off to
Duke. We arrived at 1:00 in the morning on the 16th. Once I got Ry's
IV medicines together I went to hook him up - only to discover a
temperature of 102.2. His breathing was also labored. Tylenol did
not relieve the fever as quickly as usual which meant a sleepless
night of taking vitals every 15 minutes and rotating wet clothes
across his hot little body. It was 5 am when the temperature finally
came down.

The first day at Duke turned out to be much more than we bargained
for. Ryan was cultured due to the fever. He was only supposed to
have a Pulmonary Function Test and physical. In addition, he needed a
chest x-ray, platelets and a potassium infusion - I think that's it.
The platelets were the things that really threw me off because after
he got platelets on Monday he was in the 130s and on Tuesday at Duke
he had only 13. It was dinner time when we left there. Exhausted
from the last 2 days, I got in bed at 10:30 only to be awakened at
midnight by Greg telling me that the doctor on the floor of the Bone
Marrow unit at the hospital called and told us to immediately come in
for antibiotics because bacterial infections had grown from the
cultures.

We roused Ryan and left for a 4 hour adventure to the "BOP" room on
5200 for Rocephin and Vancomycin - some big antibiotic guns. His
cultures grew Staph Epi and a Strep. Greg was having flashbacks of
life on the floor which was nearly his undoing. Ryan was an absolute
trooper. He had not had a good night's sleep for a while due to
congestion and breathing issues over the few days prior to our trip
and had finally settled in that night until we had to get him up.
Once there, he sat up and told me he was hungry and interested in
watching a movie. Next thing you know Ryan is watching Scooby and
eating mashed potatoes, lima beans and pineapple slices. When we were
leaving the floor, Ryan told me that Frannie was still here - we had
talked about her often since the transplant and that she was still
there - but I had not told him of her death. I felt a big lump in my
throat.

We made our way back to the hotel to catch a couple hours of sleep.
The next morning was the scheduled big event - the reason we went
there. He was set up to get the boost - which is the infusion of the
left over stem cells from the cord blood he got in the transplant. It
turned out to be a blip on the screen for the day - but none the less
dramatic to me. Brooke - our good friend and nurse to Ryan - took
care of Ryan. When the tiny bag of stem cells arrived I stared into
the bag - willing it to have the powerful T-cells that we needed.
Brooke and I literally squeezed all parts of the bag and tubing to get
each and every drop into Ry. The stem cells were already diluted in
some medium when they arrived at the day hospital but I'm told the
amount was roughly 3 cc's of actual cells. The hope is that some
powerful (unsuppressed) T-cells go in and find lymphoma and kill it.
T-cells multiply much faster than lymphoma - and although I don't know
the mechanics - I know it kills cancer cells. In addition to the
boost, Ry got more platelets, another potassium infusion, Rocephin and
Vancomycin - I think that's it.

Afterwards - although we left the clinic at about 7 pm and Ry was
exhausted - I felt a great need to celebrate. Brooke and Tori (Ryan's
"best buddy") joined us at a Japanese steak restaurant and we did just
that - celebrated. Although Ryan wasn't feeling too hot, I think he
enjoyed his first experience with watching a chef chop, toss, cook and
entertain.

We awoke Thursday to head to the clinic for the first dose of
antibiotics so he got the dose before we headed home. We finally got
back home in the late afternoon. The antibiotics were delivered for
us to start the evening dose. They made each of the antibiotics split
doses so that half would go in one lumen and half in the other. That
meant that both of his lines were tied up with antibiotics and I
couldn't do the other 2 home IV meds - GCSF and V-Fend until those
were done. At 1:00 am I hooked up the last medicine and drifted off
to sleep on the couch next to Ry's bed. My intention was to be there
when it finished at 3:00 am so I could unhook him and flush him. I
don't think I quite made it - Greg ended up waking to the pump alarm
and completed the process.

Friday we got up as early as our weary bodies would allow. In my mind
I knew I was wiped but that I could finally get a good night's sleep
that evening - or so I thought.

Ryan's breathing continued to be labored and his swelling was getting
worse. At this point, he seemed to be carrying around a decent amount
of fluids in his face, his legs - and now his torso. He needed IVIGG,
platelets and blood. For various reasons we determined that time
would run out before we could do all of them so the IVIGG was put on
the back burner. First up: platelet transfusion. During the
platelets transfusion, Ry's saturation dipped down to a point that Dr.
Weil sent us to the hospital. The saturation level is the amount of
oxygen he is getting into his lungs and correlates directly to his
ability to breath. We left his bag of red blood cells at the clinic
and made our way to the hospital.

His saturation rates were great when we got there but I wasn't all
together displeased to be there because of the increased swelling and
fluid retention - mostly in his abdomen.

Another chest x-ray was done and the result was the same as the last 2
over the last couple weeks. Wet lungs. No pneumonia. No obvious
sign of infection or lymphoma. He still needed his red blood cells -
and it took the hospital a ridiculous 5 hours to get the blood to the
floor. The transfusion ended at 1:00 am and Ry's saturations stayed
fairly stable and good. We slept a little and then left in the
morning. The fluid issue was never directly addressed but since his
vitals looked good we marched along as in the previous cycle where his
body took care of the fluids over the course of the cycle as he
recovered.

Well this time his body just couldn't handle the fluid overload. On
Saturday we noticed continued hard and heavy breathing. It was like
he couldn't catch his breath. He desperately wanted to play with
other children and asked me to call some of his friends. Luckily our
neighbors were home and invited us to visit. Ry enjoyed hanging out
with Joseph and Amy despite his inability to get around well. He
talked about all his favorites things with them - Pokemon, Digimon,
and the like. When we returned home I noticed the whites of his eyes
looked yellow. The fluid issue continued to get worse and his belly
was getting round and very distended. His breathing was difficult and
we just didn't like the whole picture. After speaking to Dr. Perdahl,
we headed back to the hospital and checked in that evening.

Ryan was not doing too hot at the hospital. His saturation rate was
not nearly as good as the prior evening. His breathing was at a
worrisome point. Ryan's liver was enlarged and he was jaundiced. His
gall bladder was large indicating poor nutrition status. Greg and I
both stayed over night in the hospital room - with great concern. On
Saturday morning Ryan had a CT scan. The heart was surrounded by a
great deal of fluid. It needed to come off asap. There was also a
good deal of fluid in the lungs but not the primary issue. The heart
was being compromised to a degree that it could collapse upon itself
with more pressure from the fluids. It did not appear that he had
Venal Occlusive Disease of the liver or that his lymphoma had grown
back in the liver which were the 2 most likely culprits prior to the
CT.

Off we went to the PICU for a procedure called a tap to puncture the
area between the sack around the heart and the heart - the location of
all the fluid. There would be a catheter left in dwelling and coming
out of his chest to drain fluid which might accumulate after the
procedure. It was a sobering serious situation. The risks were great
with a child in Ryan's condition. He had never gone under anesthesia
under such poor breathing conditions. His platelets are continuously
low making him a very big risk for uncontrolled bleeding. He was also
neutropenic which means he is in the highest risk category for
infection.

It was the longest hour and a half of my life - especially because
they estimated ½ hour total.

They got 400 cc's of fluid off around the heart during the procedure.
An additional 600 to 700 came off over the next 12 to 18 hours -
mostly during the first couple hours post surgery. An incidental
procedure was done to the lung on the side of the heart. In the first
pass to the heart, the cardiologist entered the area where fluid was
dwelling around the lung and drew out about 45 cc's of fluid. Not a
bad thing to get it off even if unintended. It explained the delay in
the procedure. The fluid coming from the area around the heart was
bloody. There may have been some blood there before the procedure but
some has been attributed directly to the procedure itself. It was
explained to us before hand that there is a good chance that a vessel
or the heart may get nicked in the procedure given the location of the
fluid and what surrounds that area. It seems that risk was realized.
There is a real concern about the loss of blood because of his fragile
anemic state as well for bleeding due to his platelet deficiency. He
has been monitored for these issues and transfusions have been
essentially around the clock.

The post x-ray done in the room immediately after the procedure showed
a better picture of the other lung on the right side. There was a
good deal of fluid in that lung. We agreed that while Ryan was still
under anesthesia that they should do a tap of that lung as well and
remove the fluid. About 300 cc's was removed from that lung. All
total it was determined that there was nearly a liter of fluid removed
from his little body. The best news was that he tolerated the
procedures well - I couldn't ask for more. That horrible fear that
you have said goodbye to your child disappeared - at least for the
time being.

I know he's sick - we all know he's sick - but it really hits home
when the PICU nurse talked about what a sick boy he is - think about
her perspective. He was (and is) stable in the PICU. He is not
currently one of their sicker kids - the nurse was just referring to
his whole health status.

The cause of the fluid overload and retention is unknown. That is
being studied from every angle with many different tests being run on
the fluids. The options are too varied and many to list here but
include the obvious viral, fungal and bacterial infections. One other
likely explanation is the toxicity of the drugs especially in
conjunction with the treatment for transplant.

Many of the tests take several days to get results. Depending on
whether there will be a definitive diagnosis, the treatment may
change.

For now we are desperately trying to get the fluid off and out of his
major organs and to drain the fluid from all the other spots in his
body. A minimal amount of fluid continues to drain from the catheter
coming from the space around the heart. I'm really bummed that the
right lung seems to have filled up to the same extent it had been
yesterday. After the procedure yesterday there was really no
intervention to remove the fluid from his lungs or other parts of his
body until late afternoon - outside of the catheter from the heart. I
watched his face, feet, belly, penis and hands fill up with fluid - I
could see it growing before my very eyes. And I knew from the morning
scan that his lung had filled up again over night.

The fluid is sitting outside the cells. He will be getting diuretics
to help his body to urinate the fluids out - the only problem is that
diuretics can only get the fluid in the cells. In order to pull the
fluids into the cells his body needs protein which sucks it back in
and retains the fluid in the cells. Ryan is severely malnourished so
they are trying to get the protein by way of blood products and
albumin infusions. We can only hope and pray that he will not need
any other invasive procedures and that this attempt will eliminate the
fluids from his body - especially the lung.

So on top of all of this he had his first reaction to red blood cells.
He has gotten countless units of red blood cells over the course of
treatment. Today his body reacted to a unit. Luckily Dr. Perdahl
rushed over to the PICU and handled the situation before it got out of
control. The PICU docs were unavailable.

I had a rough day in the PICU because I did not feel like our concerns
were addressed timely and appropriately. There was very poor
communication from the doctors and staff to us. Their attitude was
discourteous and unresponsive. No doubt they had many issues going on
with other children but I was very frustrated at the lack of
communication or concern for my feelings. I was approached from a
very defensive and guarded position by virtually the entire team. I'm
not used to that at all and hope for a better day tomorrow.

Ryan has been fairly traumatized by this whole experience. The actual
punctures are painful. He also awoke with a G-tube coming out of his
nose. It was recommended during the course of the procedures so it
was not something I had prepared him for. I knew he would be angry
about it and I was right. The G-tube is a direct line to the stomach
and small intestine. When things are put in the tube, it is as if you
ate them without the benefit (or displeasure) of taste. He can get
all of his oral medicines through the tube. If I could get Ryan to
really appreciate this maybe he wouldn't be quite as angry. He can
also get Pediasure which is packed with all the nutrients he needs.
It was important to have in order to get him back on the right track
for nutrition. He is not eating and he desperately needs better
nutrition. TPN is a poor choice right now due to his liver issues.
Also, his gall bladder is enlarged due to his poor nutrition. If he
uses his gut - as the G-tube will then his gall bladder will constrict
and help remove the bilirubin in his liver. All very good things.
But the poor sweet guy wants to leave the room desperately. He
obsesses over how long we might be there and what it will take to get
us out of there. I have no good answers. He's sick of hearing me say
that we are working hard on that and that we are going to make him
better and then he can leave.

I leave you with these good thoughts: Ryan is currently stable. He
sits in the bed clutching his Yoda light saber - ready to use it on
anyone brave enough to try to wrench it from his hands. He's witty
and spunky. Fortitudine Vincimus - By Endurance, We Conquer.

Warm regards,
Lori


SUPPORT TEAM UPDATE to the above information...
Tuesday Aug.23...11:45 am
Ryan's condition has worsened since last night's update. His oxygen saturation levels
have gone down considerably (curently at 91% - a LOW number) despite a constant
feed of oxygen. He continues to retain water despite the catheter draining fluids from
his heart and lung area. His body has become severely bloated due to the back up of fluids
and he is having trouble even opening his eyes because it is so swolen around them.

The hope is that they won't have to incubate him (breathing tube and machine led breathing)
as it is typically not an easy procedure to recover from given his frail condition.

The doctors are trying to determine exactly what is causing him to retain fluid and have
considered diagnosis such as Veno-occlusive Disease, a serious disease that blocks the small
veins in the liver.

Keep Ryan and family in your prayers. We will update as often as possible.

Tuesday Aug.23...5 pm
Ryan's condition is stable now. He is currently on a breathing machine (not incubated) called a
Bipap machine which forces oxygen down his airway. His oxygen saturation level has risen to almost
100% (a great improvement). They are also giving him a miriad of drugs to draw the fluids out from
his system, maintain nourishment, and treat the many symptoms he is experiencing. Many tests
are being performed now to determine the cause of these issues. We will update as often as possible.

The Support Team

Friday July 15, 2005 to Tuesday July 26, 2005

Dedication.

I dedicate this journal entry to Frannie. Francesca King. Frannie
passed away on Sunday the 24th of July at Duke University Hospital.
She was four. I remember the first time I met Frannie. She had a
quiet loving spirit. She was soft and sweet and friendly. It was in
the lobby of the out-patient clinic at Duke. It was one of the first
days we were there. As is typical, Ryan had a few action figures he
was playing with on the floor. It was a Teen Titan battle. Frannie -
with her big chestnut eyes - marched up to Ryan and gave him her
heartbreaking smile. She had her hair braided in pig tails and on
that day Ryan gave her a nickname that only he referred to her as - he
called her Piggy Tails. She picked up one of Ryan's guys and the two
played happily until one was called in to the clinic. Thereafter they
made eyes at each other and played together - it was Ryan's first
friend at Duke.

I also remember Viesta - Frannie's mom. I saw her across the lobby
with worried eyes. I knew that look. As is turns out, Frannie didn't
have cancer. She had never had chemo. She had some unnamed
non-specific auto-immune disease for which the medical community
believed transplant was her best hope at a normal long life. The look
in Viesta's eyes made even more sense - she had the fear of not
knowing what was going to happen to her child when she was given the
toxic chemotherapy drugs. And added to that fear, she had the fear
that all the transplant parents shared - we were signing our kids up
for a life threatening procedure. But we all did it for a good
reason. We did it to save our child's life. We knew the risk but the
alternative was not acceptable - giving up was not an option. She was
a completely dedicated mom. She loved Frannie and all her children
fiercely.

Frannie checked into the hospital around the end of January. Ryan
asked about Piggy Tails. And while he was getting radiation and chemo
out-patient to prepare him for transplant, we would tell him that he
would get to be Piggy Tail's roommate at the hospital soon. It was
one of the reasons he looked forward to staying on the floor of 5200.
Frannie never left Duke - until she became an angel. She fought as
hard as any child could. She was a true warrior. She went out on one
pass while she lived at Duke - and that was to celebrate her fourth
birthday. It was in the beginning of February - prior to transplant.
Ryan went to her birthday party. She had a lot of fun that day -
celebrating her birthday alongside her twin sister Jessie. Ryan gave
Frannie a Teen Titan figure as a symbol of their friendship that
started outside the clinic. Frannie and her sister were showered with
love and gifts. It was obvious that this was a family that cared
deeply about each other.

I can only hope and pray that the love that they have for each other
will comfort them during these days of mourning. Frannie doesn't feel
pain anymore - and for that I am sure they are grateful. Her spirit
will live on in those that had the privilege of knowing her. I
consider us lucky to be among that group. And now Frannie is an angel
- looking over the other children and her friend Ryan. We love you,
Frannie.

Ryan's week in review.

Everything pales in comparison to the loss of Frannie. When I think
about Frannie's struggles, I am that much more grateful for Ryan's
accomplishments. There are times in every day that Ryan has pains or
issues related to transplant and cancer - But there are always lots
of moments of joy. Each day. He is here with us - at home. He talks
to us. He can usually get around on his own. His major organs are
functioning on their own. He laughs and he tells stories and he plays
with his silly action figures and he dotes on his little brother and
he kisses me and hugs me and pats me on the back. What more can I ask
for?

I can barely remember all the things he has done this week - and
that's a good thing because it means he is active and playing. I can
remember play dates with Lou, Diego and brother Tony, Uncle Chris and
Aunt Angie. I was with him when we saw Willy Wonka in a drive-in
movie theater with his beloved Chris and Angie. And I can still hear
his giggles during the parts when Augustos was sucked into the
chocolate river and Veruca met her appropriate fate when she was
shoved down the trash chute. I have a specific memory of a funny
conversation last week when I "triple dog dared" him to do something
like take his medicine - and he responded by imitating the infamous
dare scene in A Christmas Story by picking up a spring roll and
sticking his tongue to it and muttering some incomprehensible excuse
why he was not able to do what I asked him to do. I recall sitting at
the play table with him in the doctor's office and making sand art. I
remember his relief when I rubbed his arms and legs when they ached.
And I feel joy when I see his little face losing the puffiness and his
hair coming in. The hair thing is a little deceitful because it leads
you to believe he is no longer sick and yet there is still a fierce
battle going on. There are too many potential pitfalls to count - or
to constantly worry about lest I find myself consumed in fear. I felt
pain in my heart when he screamed about his achy legs and told Greg
that he wants the bad guys out of him - that mom told him that he
feels this way when the good guys in the medicine go to find the bad
guys in his body - and he wants the good guys to get rid of all the
bad guys. He just wants the pain to stop. But when I put my head on
the pillow at night - I know we won the battle for the day - and
again, What more can I ask for?

Medical Status.

We have been watching his blood pressure go up on a daily basis which
is likely related to some sort of kidney problem. It is not
considered too serious at this point. For now it just means one more
medicine to add to his daily intake. Ryan got platelets Monday,
Wednesday, Friday and Monday. We expect him to get them again
tomorrow (Wednesday). He is also needing blood transfusions about
once a week. The need for constant transfusions raised a concern by
some of the docs up here that the graft is in danger but Dr. Martin is
not overly alarmed at this point.

Ryan is right in the middle of Cycle #2 of Gemcitibine / Venerolbine -
a four week cycle. His body handled week #2 fairly well and thus far
week #3 is even better. Thankfully we have not seen the Polyoma virus
- the one that causes him to have painful frequent urination.
Hopefully our changes with adding Prilosec and upping his parameters
for platelets have done the trick and we can repeat this for any
future cycle. He is also eating slightly better. He is still a mere
15 killograms (that's 33 pounds) but at least he is holding steady.

We are still kind of wandering down a path without much direction.
For now, the doctors think these chemos are the way to go. It looks
more and more like we may postpone our trip to Duke - although I think
Dr. Martin is ready, willing and able to give the boost at anytime
with the only criteria being "microscopic" disease. Sometimes it
seems to be a lofty goal. But whenever the time comes, I know that he
will be ready to go into action on a moment's notice.

Still no outward signs of cancer - sigh of relief. Although we can
never be sure of what's going on in the inside. No one is overly
confident with his cancer. It's a day by day thing.

Scans.

Ryan had a CT scan of his neck, chest, abdomen and pelvis yesterday
the 25th and a PET scan today the 26th. This will allow us to take a
look at the inside. We will learn about the results on Thursday. We
have a meeting scheduled with Dr. Horn to discuss the results and the
game plan for treatment. If this regimen is working then we will
probably keep doing it. The issue about when to get the boost of the
left over stem cells at Duke is really up in the air.

Birthday.

Ryan's fifth birthday is this weekend. We already had one celebration
with our dear friends the Sochas. The next celebration will be our
small party on Saturday. And then a really big event - we are
planning to take Ryan to meet Destiny's Child - yes, that means
Beyonce - on Sunday - on his actual 5th birthday! It's all thanks to
Chassity who insisted that they let Ryan go even though he was not a
teenager. It's pretty cool - Destiny's Child set up this get together
to meet kids who have diseases and other serious medical issues.
Beyonce doesn't know it yet, but she is Ryan's girlfriend. I hope to
capture a picture of her giving Ryan a big kiss for his birthday. And
she will probably never get the chance to understand how truly lucky
she is to have met him - how precarious his condition is and that
there was never any guarantee that he have a fifth birthday. And she
will get to celebrate this milestone with him. I remember the sheer
terror that would settle upon me when I thought about how many kids
don't make it through transplant. And of course Frannie comes to mind
again - and I so wish she was here to celebrate with Ry. I don't know
that I will ever make sense of it all. But I know one thing for
certain - the loss of Frannie only emphasizes how precious life is.
Each birthday is a gift. It goes without saying that we are overjoyed
to be celebrating the Ry-guy's fifth birthday.

Warmest regards,
Lori

Update July 14, 2005
covering July 6, 2005 to July 14, 2005

Wednesday July 6, 2005

The day started off rough - it was a no eating / no drinking day. Ry
was scheduled for surgery at 12:15 to have his tubie with the single
lumen removed. We made a short stop into the clinic first to make
sure his platelets were high enough for surgery. By 10:00 am, Ryan
was holding a pudding snack in one hand and a rice krispy treat in the
other. He was dying to eat and drink. He wanted them so desperately
that he got them and held them in his hands. It was so sad.

We made it to the hospital by 11:00 am - the appointed arrival time.
Ry was called back by noon and was holding up with pretty good
spirits. He knew the end was near. Or so it should have been. By
2:00 pm, I was angry. We lost our surgery time because the surgeon
was running late. I knew his surgery would be very quick so I could
not understand for the life of me why he couldn't get squeezed in when
she arrived at 12:30. I reached the end of my fuse around 2:15 and
found a back room with the pre-op nurses and let them know how I felt.
It was unacceptable. They told me it would be at least another hour
before an operating room would be available. No. That's not okay. I
explained to them that he had not eaten or drank for 16 hours. I
explained to them that he is a chronic cancer patient who has enough
pain and suffering with cancer and the drugs but doesn't need to be
put through the unnecessary torture of waiting for a procedure that
requires him to refrain from eating or drinking. I let them know that
he is nutritionally unwell and that a day of starvation really takes
an additional toll on his body. And then I asked them who would like
to accompany me to the waiting room to explain to him that there was
no operating room.

It was then - and only then - that a nurse called the main operating
room and found an available room there. It was still several minutes
before they could pull it all together with the anesthesiologist, the
nurse from that o.r. room and the surgeon. By the time he was under
anesthesia is was 3:00 pm. It's just not right.

He awoke very pleasant - and very hungry. The first thing he did -
according to the recovery nurse - was pull his shirt down to inspect
the area where the tubie had been and then gently touch the area that
had been covered by a bandage since January when he got this tubie.
We were called back about 4:00 pm but I found out from the nurse that
he was in the operating room for SEVEN MINUTES - yes, he waited all
that time for a 7 minute surgery!!!!! Barbaric.

He enjoyed the rest of the evening - eating and drinking at will -
albeit small amounts.

Thursday July 7, 2005

A day off - ahhh. Greg took Ryan and his buddy Ben to see Shark Boy
and Lava Girl. Ry was tired but overall enjoyed the day.

In the evening Ryan had an intense headache and then he threw up. To
explain the emotional side for Greg and I is nearly impossible but
these episodes test us to the limit. One of our biggest fears is a
relapse in the central nervous system. First and foremost, it is
excruciatingly painful. Second, it is in such a dangerous and fragile
area involving the brain. Last, it would be a devastating set-back
that he may not be able to overcome. I tried to keep my head together
and explain to myself all the other possible reasons for the headache
and vomiting. I thought of many. Greg was still focused on cancer in
the central nervous system - and who could blame him. It's a hard way
to live. We treaded lightly all night - fearing a repeat. Thankfully
it did not come.

Friday July 8, 2005

Although a typical long day at the clinic, it was quite pleasant. Ry
felt pretty decent - and it's no coincidence that he is feeling well
as he nears the end of this cycle. He was transfused with platelets
and red blood cells and was given his weekly IVIGG. Like I said - a
long day.

Dr. Horn shared our concerns about the central nervous system. Upon
questioning she did list several other reasons for the headaches -
including poor nutrition which was not helped by the day long
starvation on Wednesday and low hemoglobin. If his headaches
accompanied by vomiting continues, she will insist on a spinal tap.
She and Greg consider doing one for peace of mind even without
symptoms. Myself and - according to Dr. Horn - several of the other
doctors think his disease changes from day to day so one clean spinal
means nothing.

Ryan was pleasant and upbeat despite the hours. It makes sense
actually - if his body is stronger and he's not feeling horribly, then
he finds a way to make the most of his environment.

We were yet again the recipients of an incredible act The Lansbury
family has a son named Ben in treatment for leukemia. They see us
every time they come to the clinic - because of course we are always
there. Kecia, Ben's mom, brought us lunch on Friday. It's just so
amazing to me that people reach into their inner strength and focus on
others when in fact they face challenging issues each and every day as
well. They have also invited us to dinner on Sunday.

We got home at 6:30 pm in time to play with Evan. His latest party
trick is to dive with his arms straight out and land flat on his belly
- then he rolls over 2 times until he's kicking his feet in the air
like a turtle on its back.

No headaches. No vomiting. A good day.

Saturday July 9, 2005

The day started off great. The Kelly Peterson clan came over for a
picnic. Ryan, Riley and Caroline frolicked in and out of the house.
When Riley first arrived, he ran up to Ryan and gave him a bear hug -
nearly sending Ryan onto the ground. I loved his enthusiasm. Karen
and Jim screamed in fear. Ryan said, "It's okay - I have platelets."
And he's right.

When Jim was passing out the food for lunch, he explained to Riley why
Doritos were adult food and might make kids teeth fall out (or
something of the sort). That was working until Ryan explained that he
can have Doritos because they have phosphorous. Again, he was right.

Ryan's magnesium, potassium and phosphorous have been way out of wack
lately - the nutritional problems. We continue to identify new ways
besides yucky tasting supplements to get these things in his body.
Did you know that dark soda has phosphorous? And Doritos has 20% of
the daily recommended allowance.

Ryan got a little clingy towards the end of the visit with Caroline
and Riley. I was trying to catch up with my friend Karen but Ry isn't
used to sharing me. We will have our work cut out for us when this is
all over - but I will do it cheerfully to be in that position.

No headaches and no vomiting. Another good day.

Sunday July 10, 2005

Hooray for one bandage change!!!! It takes us several hours to get
through the double bandage change. It still took a while but much
less traumatic having to do only one. Oh the day when we have none.
For whatever reason Ryan really hates changing them. Some kids do it
without too much fuss. It seems like Ryan is more sensitive to the
tape - I know at Duke the other parents would think we were torturing
him during the dressing change. He was considered a pretty happy go
lucky kid in transplant because he was generally feeling pretty good
and was pretty happy. But when it came to dressing change day, the
screams reverberated down the halls of 5200. Hooray for one bandage
change!!!!

We had a fabulous day. The last day before Cycle 2 starts.

After the dressing change, we went to Daniel's baseball game. I had
wanted to go to one all season but his counts were too unstable.
Since he was without chemo for nearly 3 weeks and his white count had
been really good for about a week, we ventured out to Daniel's last
game of the season. It was for sure the highlight of the summer thus
far.

First Ryan saw his cousins Brady and Alexis. Brady gave Ryan a big
hug and Alex gave us her usual bouncy big smile. As soon as we got
there, Ryan spontaneously and silently lifted his shirt to show his
aunts, uncles and cousins where the old tubie used to be. Everyone
admired his chest and told him how they were so proud of him. Ryan
followed Brady and Uncle Kenny nearly everywhere and they were happy
to have him tag along. Ryan had never been to a game before. He
watched intently as Daniel fielded the ball. And he watched proudly
as Daniel hit a two out RBI double in the last inning. We had planned
to stay one inning.

One of my favorite parts of the event was when Amy yelled to Daniel
(her son) when he was up in the last inning with two outs and they
were losing, "Have fun, Daniel." So precious. So mom.

After a short rest at home, we made our way to the Lansburys. We all
had a blast. I can't remember feeling so carefree in a long time.
What I loved most is that it's clear when you go to their house that
their children come first. To me, their priorities are perfect.

Again, no headaches or vomiting. Central Nervous System involvement
doesn't come and go. If Thursday's episode was CNS involvement, it
would have continued over the weekend. Our deepest fears were
squashed.

Monday July 11, 2005

Day 1, Cycle 2

Ryan got Gemcitibine and Venerolbine today. Just as soon as his
counts were excellent and he was feeling good, we do something to
knock them down. Well - if it means cancer free, it's worth it.

The clinic was pretty fun today. Ry needed no other transfusions or
other meds so the day was actually quite short in our book - in by
9:30 and out by 2:30. Our friend Yuri sat in the room with us most of
the day. She is on the list with the all-time greats like Chassity
and Michael Bean. Yuri has cancer. She is 18. She is so sweet and
positive - even when she feels bad. Today she had extremely painful
mouth sores but continued to smile and try to satisfy her belly
despite the pain in her mouth. While doing so, she showed Ryan the
depths of courage. He really likes her. When we're home, he recounts
things she told him - many things that he seemed to be paying no
attention at the time.

Like clock work - in the late afternoon - the body aches and low grade
fever began. This is the pattern we've come to learn from the last
cycle. The day he gets these chemos, he feels pretty rotten by late
afternoon. We were able to keep away nausea and vomiting by drugs -
thankfully.

Tylenol helped us through the rest of the night. My poor sweet baby.

Tuesday July 12, 2005

We were able to avoid a clinic visit but Ryan still had a morning
appointment with Dr. Sarnes, the child psychiatrist. He feels fairly
comfortable with Dr. Sarnes - although still only an arms reach (or
less) from us. They're in the infant stage of their relationship but
it appears that Ryan is willing to open up - ever so slowly - to Dr.
Sarnes.

After we are gone from his office, Ry will often refer to exchanges
that they had. Later in the afternoon of this appointment, Ry sneezed
and told me, "The wizard was right mom - I had to sneeze." And then I
remembered that Dr. Sarnes uses a wizard doll to communicate with Ryan
and at one point told Ryan he was going to sneeze. At the time, Ryan
insisted that he was not going to sneeze. I think his comment later
in the afternoon was a recognition that maybe this Dr. Sarnes and his
wizard doll do know something afterall.

Ryan was feeling pretty decent most of the day. He was eating like a
bird which is only exaggerated by watching his brother Evan scarf down
his weight in rice and meat.

Wednesday July 13, 2005

The drugs are certainly taking their toll. Ry felt pretty crappy from
dusk to dawn. It's a mirror image of Cycle 1. Day 1 was rough, Day 2
was okay, Day 3 went straight down hill and kept going for a few days.
If the past continues to be a predictor, the weekdays should be tough
and then he will make improvements over the weekend only to be
followed by the start of it all again with chemo on Monday. The
second and third week were the hardest because of the painful
urination. We have a game plan to try to limit the bladder issues
this go around. Keep your fingers crossed.

Ryan's platelets plummeted to 2. His hemoglobin also made a sharp
drop. He was transfused with both - making it another very long day.
He got there at 9:30 am and left after 6:00 pm. Ry was very weepy all
day. In between cries he was usually angry. His blood pressure was
very high - reaching 145 over 101 - and refused to come down even
after given Lasik to flush out some of the volume of blood products.

I left the clinic after lunch to take Evan to his 18 month physical.
He needed shots which I told Ry about before leaving. I commented to
Ryan that I considered putting EMLA (numbing cream) on Evan beforehand
but I wasn't sure where he would get the shots. Ryan looked at me
very matter-of-factly and said that I needed to give him Tylenol. I
followed Ry's expert advise and Evan bounced right back after getting
the shots.

Thursday July 14, 2005

A difficult day for Ry and me. We weren't supposed to go to the
clinic today. It was the day off. But since Ry was having such bad
blood pressure issues, the doc didn't want to give him so many
products in one day. An infusion of a large volume of medicines or
blood products can make your blood pressure go up. They were
concerned that if we waited until Friday that we might have a slew of
things to give him and induce high blood pressure again.

Ry had a very poor night's sleep - which meant Greg and I weren't
getting much as well. He was quite achy and his mouth had begun to
hurt. Uh oh - mouth sores. The #1 worst side effect outside of organ
failure. I wasn't quite prepared for these. Last cycle he had a
day's worth of minor complaints. He has already surpassed that in
this cycle.

Since there was little sleep, we scraped ourselves out of bed a little
later than ususal, and it was hard to start the day. We didn't get to
the clinic until around 10:30. Ryan was already very clingy and
screaming about mouth pain. The plan was for Ry to get IGG (immuno
gamma globulins - a/k/a antibodies) and make it a short day. It is a
3 hour infusion. It was a busy day for the nurses so our plan didn't
quite go off as planned. We didn't walk out of the clinic until 5:00
pm. It's no one's fault but it stinks for Ry. The worst part is it
didn't help in the blood pressure department at all. He walked out
with a blood pressure of 126 over 101. Ry's primary nurse, Caroline,
has been concerned that there's more to his blood pressure issues -
and we agree. I guess today just proved that.

Poor sweet Ry - tried to have fun during the day. He laughed and
chatted with Chassity and Yuri. He talked with Yuri about her mouth
sores - and his. They discussed what they could eat. He learned from
her about a mouth rinse that might help. He showed Chass some of his
Pokemon and described their powers. But it was never too long before
his mouth became an issue or he was crying from tiredness. At times
he was aggravated with me - but followed immediately by tears of
remorse. As soon as he would say a cross word to me, he would burst
into tears and yell, "I love you, mommy. I'm trying. I'm trying so
hard. I'm not mean. I don't want to be mean." My heart broke in a
million pieces at least 10 times today. I know he can't control his
emotions and has no one to complain to other than me. I did love each
and every hug and kiss I got from him during those remorseful times.
I'll take 'em whenever I can get 'em.

Because of his pain, Ry got a dose of morphine shortly before we left
for the day. On the way home he felt remarkably better - able to
drink without pain - and even had one french fry. For most of the way
home he chatted on the phone with Greg. He told him all the days
events - and from listening to him you would think he had a decent
day. He told him all about Yuri and that she wasn't feeling well - he
said it with such empathy. And he told him that there's a mouth rinse
that should help his mouth - according to Yuri. He told him about the
new chairs - the clinic got new recliner chairs courtesy of Ellen
Degeneres - and how Chassity almost fell off of one when she was
testing out the bed function.

Ry ate okay for him - that's still a small amount to most of us - only
to throw it all up tonight. Despite the pains and emotional roller
coaster, there were definitely good parts to the day. One high point
was a visit from one of his playmates, Lisa Barnett. What incredible
friends we have.

Ry will go back to the clinic tomorrow and then have the weekend off.
Then back to the clinic on Monday for chemo and the 2nd week of the
cycle. We'll keep looking for the bright spots even in the cloudiest
of days. Thanks for your continued love, support and prayers.

Warm regards,
Lori

Update July 5, 2005
Covering Saturday June 25, 2005 to Tuesday July 5, 2005

The week escaped me. It's unreal how fast time can speed by.

I rate a good week as one that has provided lots of joy and laughter
with Ryan by our sides. It was a good week. We had many times with
the four of us that were perhaps considered ordinary by some but
defined as a gift to us. When Evan is tearing up the house and Ryan
is laughing at Evan's antics - I think life is perfect.

The week had its usual dose of difficult moments for Ryan. At the
time they consume us. In retrospect they were just bumps in the road.
The weekend of June 25th preceded the start of the third week of the
four week cycle. The current cycle is two weeks on chemo and two
weeks off. Ryan's body was showing marginal improvements in recovery
from the first two weeks of chemo. He was still having considerable
pain with frequent urination with small clots and speckles of blood.
No wonder it was painful. We ended up increasing his parameters for
platelets and hooking him up to overnight fluids to try to give his
bladder and urinary tract some relief.

As week three progressed Ryan's counts began to come in. His white
count had bottomed out at zero despite neupogen every day. He was
getting platelets every other day because they were getting eaten up
as fast as they were being transfused - as soon as they entered his
system they had a location to go and plug - namely, the bladder and/or
urinary tract. He was at the clinic every day but Tuesday in order to
get all the necessary transfusions and infusions. But his energy,
strength and "health" improved with each day. His platelets weren't
getting eaten up as fast and his white count was on the upswing. The
urinary issues were disappearing. A perfect set-up for a holiday
weekend.

We were scheduled to go into the hospital for platelets on Sunday but
Ryan's counts were good enough that we were able to avoid that trip.
Instead we played and ate and got ready for a big Fourth of July
celebration. Ryan's eating has done a 180 since his counts have come
back in.

Fourth of July

I try to avoid thoughts of life without Ryan but somehow on holidays
and special events I find my mind occasionally drifting to thoughts of
whether this is the last of its kind. Of course in retrospect it is a
sad and scary thought but when it is occupying my thoughts it is a
true motivator. It makes me reach inside and pull out my best. It
encourages me to engage Ryan in play and conversation. I try to drink
every last sip. And I realize I am lucky for the day.

We had a tremendous day. Ryan is at the end of his cycle and his body
is in the recovery phase. We try to capitalize on these moments.

It was so normal that it was perfect. During the day Krista and Art
stopped by for a short visit. Ryan enjoyed eating the candy dirt and
ants that they brought him. Greg found a baby turtle climbing in the
grass which provided a playmate for Ryan and someone he could take
care of for the day. Ryan got Art to fill up all the water guns - and
then squirted him with them. In the evening we had a barbeque at our
house with Greg's parents and the Sochas. Evan took a few falls but
bounced right up with his mischievous smile - ready to find more
trouble. Ryan hooked up a couple adults to his new handcuffs -
courtesy of our friend Linda in Texas (thank goodness for the two sets
of keys or I may still be locked up). Ryan and Ben argued about who
got to play with which toy and then cuddled next to each other when
the fireworks were going off. Ryan snuggled next to Papa to eat some
food - mostly from Papa's plate - for some reason other people's food
always looks better, doesn't it? Oma relaxed on the patio and watched
the kids play in the sand box and roam around the yard.

The start of Week Four

We are all holding our breath this week. Since Ryan's initial
diagnosis in November 2003, he has relapsed - without fail - whenever
he has a break in chemo. This is the second week of the two weeks
without chemo. So far no signs of tumors or skin lesions or anything
making us suspicious. I am so grateful. But I may be a little
unhinged this week waiting for it to end without signs of cancer.

Dr. Horn is also concerned. She has suggested that if Ryan's counts
permit, we may start the next cycle at the end of this week. I am
torn. I desperately want to buy him this time to feel good and enjoy
it. On the other hand, if his cancer even thinks about coming back,
we should squash it like a bug RIGHT NOW. Unfortunately the crystal
ball is not available.

Ryan got platelets today at the clinic. His other counts (red blood
cells and white blood cells) are holding up well. We also visited a
child psychologist to help him resolve some of the issues that seem to
be recurring and clouding some of the hours of some of his days. Ryan
is quite reserved with strangers but seems to feel comfortable with
Dr. Sarnes. I am glad to provide a way for him to work out the
confusing issues relating to serious medical treatment.

Ryan will have surgery tomorrow to remove the central line with the
single lumen. It is an easy surgery - but of course requires the
barbaric starvation until the afternoon. The earliest available
surgery time is 12:15 so whatever Ry ate this evening will have to
tide him over until about 2:30 tomorrow afternoon. The never ending
torture.

The Future

Who knows. No one. I continue to bug all the docs to formulate a
plan for life after the re-infusion. What we do know is that we plan
to do one more four week cycle with Gemcitibine and Venerolbine
beginning next week - if not sooner. At the end of that, we will do
scans - a PET and CT - during the week of August 25th.

Then comes Ryan's FIFTH birthday on the 31st!!!!

The following week is when we are supposed to travel to Duke for the
re-infusion of leftover stem cells. In my wildest dreams we will then
make a short stop in Virginia Beach for my work conference. You just
never know - it might work.

And then . . . ????? I don't like not having a plan - and contingency
plans. I think we need a plan assuming that all things go as well as
possible. We can adjust if we need to but the best plan needs to be
well thought out. I will continue to harass Dr. Horn, Dr. Perdahl,
Dr. Greenberg and Dr. Martin. Look out - I'm on a mission.

Thanks to all of you who continue to care about Ryan and check on his
website. And a special thank you to those of you who send me
encouraging, thoughtful and inspirational thoughts by e-mail. And last
but not least - thanks a million to those of you who rounded up fun
stuff for Ryan from cowboy stuff to old Pokemon trinkets to Power
Ranger morphers and megazords. I think I can speak for Ryan and say
you all rock.

Warm regards,
Lori

Update June 24, 2005
covering Friday June 17 to Friday June 24

This week has been like many of the recent past - filled with ups and
downs. And each up is worth a thousand smiles.

I talked to Dr. Greenberg today about Ryan's future. He believes the
next 6 weeks will be very telling. They have tried all that they know
to do - there is no identifiable chemotherapy treatment or other
treatment that has not been used on him. That's not to say they won't
put their heads together to think of something new if the need arises.
It's just that this was the end of the suggestions from the experts.
The good news is that this one seems to be working - and it has to.
The two tumors - one on his head and one on his back - that grew as
soon as he was off of Campath disappeared just as fast as they
appeared - not until after they got significantly larger and angrier,
however. This chemotherapy melted them away. Thank God.

You could ask just about any oncologist and they would say 3 or 4 days
will not make a difference with cancer - that it just doesn't grow
that fast. Ryan has made them all liars. To the medical field, he is
fascinating. To me, he is precious and vulnerable and a survivor.

Ryan is having a hard time physically and emotionally with this new
treatment. In each day we have seen his sweet spirit but only one day
was without pains and heartaches. Tuesday was the glorious day.
Stomach pains never haunted him - and he ate more than he has in
weeks. I couldn't get him enough food - and when he would ask for
more, he would follow it up with, "So what." At one point he had egg
rolls, rice, beans, slim jim, mac 'n cheese, steamed dumplings and
sardines lined up around him - and then he looked at me and said, "I
would like a chili dog, please - so what." And each time I got up to
round up the food he requested, I felt completely happy. Lou came to
visit and Ryan beamed feeling like he had a friend visiting. They
each grabbed a game controller and some sort of Pokemon battle ensued.

Ryan got another dose of the Gemcitabine / Venerolbine on Monday. He
needed more platelets and red blood cells on Thursday. His platelets
were at 1 - the lowest of the lows. He had a splitting headache until
after he got a big bag of platelets. I know he has gotten these type
of headaches when low on platelets but I felt a lump in my throat
building when I remembered those same type of headaches that he got
when the cancer went into his central nervous system. He woke up not
being able to walk because he had tremendous leg bone pain. Today we
spent the day at the clinic for him to get IVIgG (antibodies).

My questions to Dr. Perdahl, Dr. Horn and Dr. G were all about what's
next? What's on the horizon after these 2 cycles and the re-infusion?
They don't know. I want them to keep their sights firmly on the new
donor cells and cultivating them. But we all agree Ryan needs some
sort of coverage with treatment because those new cells are too
infantile to do the job on their own. And his cancer doesn't wait for
anything. Dr. Greenberg said that if these drugs continue to work
over the next 6 weeks that we would then perhaps review it and try to
cut back to some degree so that he could have a more normal enjoyable
life. He commented how it gets too hard to come so much to the
clinic. I told him I'd take this for years if this is what keeps him
here. And I mean it. As hard as some of the moments have been this
week, the minutes or hours that are good are worth the whole thing.
Honestly. Don't get me wrong - I feel frustrated when he cries and
screams for no reason. But I've enjoyed being his mother this week
and I feel lucky that I get to comfort him with a back or foot massage
when he feels achy. I hold him and try to envision the bad cells
being pulled out of his body and released into the atmosphere. I
still have complete faith that he can be healed. And I wish and pray
for it with every breath I take.

Some of you may wonder how our friend Frannie is doing. She was
transferred to the PICU (intensive care unit) this week. She was
improving to the point that she was getting ready to be released when
she built up too much fluid around her heart and then had breathing
troubles. She is improving but still in the PICU. Please keep
Frannie and her family in your thoughts and prayers.

An enormous thank you to those of you who sent Ryan some old Power
Ranger stuff - every one brightened his day. I don't know what magic
those Power Ranger morphers or Pokemon little plastic figures hold,
but I do know that they have seen him through some rough days.

Warm regards,
Lori

Update June 10, 2005 to June 16, 2005

Friday June 10, 2005

The final results of the liver biopsy showed that there were active
lymphoma cells remaining in the tumor. The group of doctors here met
and consultations were made with Dr. Sandlund and Dr. Trippett - both
renowned experts in Large Cell Anaplastic Non-Hodgkins Lymphoma. The
group recommendation was to switch to Gemcitabine / Venorelbine
beginning Monday.

In some respects, I was heart broken. I don't want his counts to dip
so low for prolonged periods for many reasons. The tremendous risk of
infections - especially in a recent post-transplant patient - are
staggering. In fact, Dr. Greenberg said, "We will expect him to be
sick. If he is not, that is a bonus." Ry will also be forced to have
more contact restrictions with the outside world. I have loosened
many of the rules as of late because his future is questionable and I
want him to enjoy all of life's experiences. I will hate the new side
effects that come along with these particular drugs. The common side
effects include nausea / vomiting, fever like symptoms, aches, mouth
sores . . . just to name a few.

We also discovered during Ryan's examination today a new lump on his
back near the middle to left shoulder blade and a bump on the back of
his head. Both seem to be fairly close to the surface - right beneath
the skin. The one on the back is small at this point at the one on
the head is bigger in diameter. Of course I hate seeing anything. It
is presumably cancer.

But we know we weakened the cancer with the Campath. I became at
peace with the new treatment decision when I realized we must strike
when this insidious cancer is weakened. We can not sit by and let it
make the next move.

The game plan is as follows. Two cycles of treatment followed by a
re-infusion of the leftover stem cells at Duke. A cycle consists of
two weeks on and two weeks off treatment. During the two weeks on
phase he will get the Gemcitibine / Venerolbine with neupogen support.
That means he will get the neupogen shots on the days off of the
drugs to boost his white count. This is ordinarily done when the type
of chemotherapy treatment is very devastating on the bone marrow
production. These drugs - especially with Ryan's new fragile stem
cell production after transplant - do just that.

After Ryan's transfusions today - leaving the clinic in the late
afternoon - we stopped by home to take Dopey out and then made our way
to the Sochas. It's nice to have such good friends.

Saturday June 11, 2005

The day started off a little sketchy but drastically improved when the
four of us made our way to my boss Dan's house in Stafford for a party
with the work crew. I miss them tremendously. They are family. Ryan
had an exhausting but very fun time. He walked all over the grounds
trying to spot the cows - and needed only a little lift now and then
by Greg. He loved that his friend Riley was there and felt so proud
when he could show Riley his power ranger zord. But he may have had
his most fun was when he threw a water balloon - or 2 - at me.

Sunday June 12, 2005

An all around incredible day. Much of the credit goes to our friends
the Fontanillas and a really special guy named Brian So. Brian is the
owner of a Taekwondo gym in Chantilly called Highkicks. The
Fontanilla boys, Diego and Tony, are members. Angie - their mom -
arranged for a private lesson for Ryan. Ry wanted Diego and Tony to
join in to make it more fun. The 3 of them showed up Sunday morning
at the gym and Brian - the owner - conducted a whole class just for
Ryan. Brian and his crew stayed late the night before to wipe down
the whole place. I was slightly nervous at first because Ryan can't
jump or squat and I was suspicious that he could not kick at all
without falling on his back.

Master Brian treated Ryan with great respect. He conducted the class
like he would any other but made sure he was nearby if Ry needed
assistance - all without drawing any attention to any of Ryan's
limitations. Ryan surprised all of us when he lifted his little legs
up to kick and didn't fall over. Ry made his own accommodations for
the times when he was supposed to jump or crawl under a bar - and they
all worked. He does sort-of a speed walk in place of running which
gets him there plenty fast. Ryan is a follow the rules kind of kid -
if Master Brian said stand on the circle - he stands on the circle.
Little Tony provided great comic relief and entertainment. He is not
so much a follow the rules kind of kid but more a free spirit. Ryan
got kick out of him - he and Master Brian would exchange amused and
exasperated looks at each other when Tony would bounce around in all
directions.

Another highlight of the lesson was when Ryan would do an especially
good 1-2 punch and then turn to his dad with both thumbs up.
Priceless.

And in fact, Master Brian told Angie that it was free unless she had a
million dollars. What makes people so good and kind?

At the end of the class, Master Brian made a big deal to announce that
one of them had earned a belt. He told them that it was the first
time in the history of his school that someone was able to earn a belt
after just their first class - and he then awarded Ryan a white belt.
If anyone wants to join a Taekwondo gym that is really fantastic, you
can get more information from their website at www.highkicks.us.

Monday June 13, 2005

Day 1 of Gemcitibine / Venerolbine. The bad news is that the lump on
his head is slightly larger and the bump on his back is way bigger and
very hard. This disease is maddening. The drugs were not without
their side effects. Ryan was very tired and lethargic all afternoon.
We kept away any bad vomiting with drugs but had an episode of what Ry
called "vomit problems". He got a temperature in the evening and felt
all around yucky. I had to keep telling myself that we want these
drugs to wreak havoc in his body so this is not an all bad thing.
Tylenol was able to get him through the night without another fever.

The absolute best part of the day is when Uncle Chris made a surprise
visit. Ryan adores him - and I am not exaggerating when I say that he
clings to him when he is near. The guys stayed up late playing some
sort of Mario Brothers Gamecube battle game. And Ryan fell peacefully
to sleep knowing that he could wake Chris up in the room next to him
in the morning.

Tuesday June 14, 2005

Rise and shine bright and early, Christopher. Ryan's ready to play.
The day was one big playdate. There were a few times that Ry didn't
feel well but overall he was soaking in Uncle Chris. They played for
hours in the car - Ry discovering the windshield wiper fluid - and
later they parked themselves in the back of the van and made lego
creations. Ryan saves up some of his hardest lego boxes for Chris to
tackle them.

In the late afternoon, Chris, Ryan and I took a trip through
McDonald's drive thru for an adventure. Ryan hasn't been especially
interested in eating in the last few days so once I saw him munching
on fries and nuggets, I took the scenic route and drove for well over
an hour to give him an opportunity to eat as much as he could. I was
thrilled that he polished off 3 chicken nuggets and about half of a
cheeseburger. I can't begin to tell you the torture you feel when
your child has absolutely NO interest in putting a morsel of food in
his mouth - and the complete extreme opposite feeling when he sinks
his teeth into ANYTHING.

Later in the evening Greg's (and Ryan's) friend Lou stopped by for a
visit. Ryan was loving every minute. At one point it was "boy's
room" in the downstairs play area and only he, Chris, Greg, Lou and
Evan were allowed down there.

Wednesday June 15, 2005

Well, Chris couldn't stay forever. We can't leave sweet Angie home
alone forever. Ryan was actually feeling pretty poopy most of the
day. Again, he ate an immeasurable amount of food - and that was what
we could force in - maybe 1/4 cup total for the day. It's hard to
watch the bones stick out further and further until you can see the
outlines of his little skeleton. The megase is not doing all that I
want it to but I really don't want to move on to TPN unless absolutely
necessary. It's hard on the liver. And the 2 chemotherapy drugs he
is on mess up the liver functions - and of course we just discovered
that he has some amount of active lymphoma in his liver. I do not
want to tax that organ any more than we have to.

The bump on Ryan's head is getting smaller - yeah! The one on his
back is big and angry and red. My take on it is that there is a lot
of activity - an attack is being mounted against an area that was just
flourishing with ugly cancer cells - the battle is on.

Thursday June 16, 2005

The bump on Ryan's back is getting smaller - happy days! The one on
his head is nearly gone and the ones under his right ear that we've
been watching since coming back from Duke have nearly disappeared.
Happy, happy days. Ry needed both blood and platelets today at the
clinic which led to a rather long day. We got home around 6 pm. But
the day really flew by - thanks to our friends at the clinic. For
Ryan, a fabulous visit was with our good friend Michael Bean. His mom
Karen and I became friends during treatment over last fall until our
departure at Duke. She sent me real - handwritten - letters when we
were there that brightened my day. Michael is one of the absolute
sweetest and greatest kids on the planet. He and Ryan have many
similar interests. Ryan could sit for hours right next to Michael and
watch him play on his Gameboy. They used to have power ranger battles
with figures in the play area. Michael is now done treatment and
doing fantastic. He had a scheduled check up today. And then it was
like Christmas. Michael showered Ryan with a huge - HUGE - bag full
of toys that he no longer plays with but thinks Ryan would enjoy.
Ryan didn't know where to begin. The two of them took apart and put
together the zords all afternoon. Michael was finished his
appointment at least a couple hours before he left. It was really the
only reason that Ryan wasn't hitting rock bottom in the afternoon.
The time - and platelets - and blood - flew by. And when Ryan saw
Michael eat a slim jim, he ate a slim jim - the first thing Ry put in
his mouth all day. Michael, his mom, and his sister stayed until we
could leave and walked out with us. It was so wonderful to catch up
with them and see them.

Of course I usually can squeeze in social time at some point. I'm not
sure what I would do without Margy. And my sweet Caroline the nurse
is always there to take care of me - and Ryan. And I always look
forward to hanging out with sassy Chasity and her mom Carrie. I love
Chas and her undying spirit. She is also a patient at the office.
How is it that all the best kids end up in that office?

The night ended a little strained because Ryan was an emotional wreck.
I'm not sure if the medicines are doing it or fatigue (which could be
caused at least in part by the meds) or lack of food or depression.
He broke down and cried for well over an hour about Onyx, the dog he
used to have. He was sad at the drop of a hat and weeping and mad and
sad all over again about everything and nothing. He finally hid under
a pillow and drifted off to sleep. A not too terrific ending for an
otherwise terrific day.

It's off to the clinic tomorrow for IVIG and pentamidine. And
hopefully a peaceful, relaxing and fun weekend.

Warm regards,
Lori

Update June 4, 2005 to June 9, 2005

Highlights:

The biopsy of the liver was done on Tuesday. There are still results
pending in the testing as of this Thursday evening. The initial tests
indicate the cells are dead - still unknown if they were some type of
infection or lymphoma, however Dr. Horn thinks it more likely to be
lymphoma since we did nothing to treat an infection. If the tests
show active lymphoma, we will have to kick up the treatment. We are
reluctant to do so because it could wipe out his bone marrow and
threatens the graft of new cells. It also increases the risk of
additional infections. And last, it may suppress any new cells
ability to fight on their own. But, we don't want the tumor to beat
us either. It's like walking a tight rope with no net underneath.

The DNA test results came back. Ryan is all donor cells! We are
elated. What does that mean? Some unselfish and generous parents
donated their son's cord blood when he was born - we no nothing of the
donor other than he is male. Inside cord blood is brand new stem
cells - the starter cells - the ones that learn to be all the cells in
your body - your red, white and platelets. When Ryan became a
transplant candidate, a search was done to find a match and it was
this boy's cells that were the best match. Almost two weeks ago we
sent a sample of Ryan's blood down to Duke to check the composition of
his blood - did Ryan's cells return and if so, to what degree. The
answer: no recipient cells (Ryan's old ones) were detected and only
donor cells were found. None of Ryan's have returned. New cells are
one of our biggest weapons against cancer. That composition can
change - Ryan's old cells can return - but the longer it remains all
donor, the less likely it will change.

The Weekend of June 3, 4, 5, 2005:

Playtime. Friday night Ryan had a couple visitors, Diego and Tony
Fontanilla. They found the power ranger cabinet and took off in all
directions. For whatever reason, Ry was up all night beginning when
his pump beeped. He is on an IV medicine that ends generally around
1:00 am. I guess when the pump alerted that the medicine was done, it
woke him up. I was in and out of consciousness and trying to keep an
eye on him. I was able to delay his hunger until 6:30 and then I was
up making Easy Mac - and thankfully the stuff is true to its name.
The truth is I was delighted to have him eat something.

After a good morning nap, Ry had a short visit with his buddy Ben.
Ryan was quite "take charge" (translated as bossy) and tried to
explain to Ben why he wanted to do exactly what Ry wanted to do.
Luckily Ben is fairly adaptable and joined in on the power ranger
action and then was rewarded by Ryan when he let Ben play Ry's Star
Wars legos X-box game.