Ongoing updates of the entire story: This page is appended as new material arrives : check
back often!
JANUARY 1, 2011
Hi,
So the lung thing is pneumonia. I'm told it was probably there all along but since he had no white cells to rush
to fight it, it wasn't noticed when they listened to Ryan's lungs. Now the white cells are slowly coming in and
heading there to fight the infection and that is what's causing the crackling they hear. I think that's the
explanation I got......something like that anyway. Brain overload sometimes takes over and I just see lips
moving. They also said that Ryan could get worse before he gets better, symptomatically speaking, as more and
more white cells head to the front lines. The Infectious Disease folks came by several times to evaluate things.
The end result was their recommendation to start him on an anti-fungal to go along with the antibiotics. This
could possibly be a fungal pneumonia, so better to err on the side of caution and just cover it. One of the
fungal tests did come back positive, but one of the antibiotics he's on can cause false positives, so we can't
say for sure if it's real. He's doing his breathing exercises to open up the lungs. He has a lot of mucous/phlegm
in his throat that he gags on and subsequently throws up. I guess it's good in one sense - gets rid of the gunk -
but it's not pleasant for him to say the least. Nor does it help his appetite. They started some TPN (IV
nutrition) but I think they said (again, brain overload) it's a modified version since it has to go through a
regular IV line rather than a port.....runs continuously rather than over 12 hours as he's had in the past. It
appears to be making him even more pukey. Great. He has several oral meds he needs to take daily, including the
anti-fungal and the Nifurtimox, so this could be a problem. He has been pretty tired and sleeps a lot. We try to
hold any meds that make him sleepy during the daytime so he can be up more and do his PT and breathing exercises.
On the plus side, Ryan has not had a fever in about 24 hours. A very good thing. He seems to be holding onto
platelets a tiny bit longer than he had been. Yesterday his ANC was 30. Not great, but better than the zero he's
been at forEVER. Blood pressures have been good as well.
Ryan and Dad are having Man Weekend together which is great. I'm home taking a breather, catching up on a few
things, cooking for Matthew, and sleeping through the night UNINTERRUPTED.
Thank-you to everyone who has sent us good wishes for a happy and HEALTHY New Year. We've been trying hard to
keep an optimistic, hopeful and positive outlook for the coming year. To say it's a stretch at the moment is an
understatement. We just take each day as it comes.
Several of our NB friends are starting the new year off with tremendous obstacles and challenges. Please keep all
our warriors in your prayers, but especially Nick Franca and Ylaria Cazares.
As always thank-you for your prayers for Ryan.
Love and "100% hope",
Norma and Paul
DECEMBER 29, 2010
Okay, the good news first:
Ryan's jaw/neck pain is greatly diminished though not gone. The area of redness/swelling under his chin
(infection) is not getting worse and the redness may be a little fainter. He has good stretches of normal temps.
Area of redness/possible infection at one of his bone marrow sites is smaller and less tender. Hmmmm......I
think that's it.
The not so good news:
Ryan does continue to spike the occasional fever, about once or twice a day. Pain in his ribs/side is still bad.
Pain control in general is still an issue......they are probably going to switch him to a different pain med as
he may be getting too tolerant of the dilaudid. They heard "crackling" in his left lung today (because we need
one more thing to worry about). X-ray results show either the beginnings of a pneumonia or atelectasis (collapse
of some of the alveoli). The pain he's having in his rib area could be causing him to take shallower breaths
which could in turn cause this collapse as not enough air is going in to properly expand the lungs. I'm told
he's already on the antibiotics they would use if it were a pneumonia so that's covered. We're having him do
breathing exercises to force more air into his lungs to better expand them. These exercises do hurt that rib
area though. Ryan's ANC is still zero. He's still needing lots of platelets. He's still not eating. They still
can't put in a new port or pic line till counts come up and fevers stop, hence no IV nutrition. He's still very
sad. Why wouldn't he be? He's been inpatient, either in Boston or Vermont, 22 of the last 30 days (and still
counting). Plus the additional 3 days as an outpatient in VT and that leaves 5 of the last 30 days Ryan was able
to be home. That REALLY sucks.
I have to say, one bright spot has been the several visitors Ryan's had in the last few days. Although he hasn't
exactly been a ball of energy, he does really enjoy visits (me too). Thank-you to everyone who has take the time
to stop by.
Thank-you also to everyone who has signed Ryan's guestbook. He really likes all the messages.
So below is the end of my update of last December 31st. Unfortunately, it still applies....just change the dates.
Same sh-t, different year.
"Well, as we said about 2007 and 2008, we're mighty happy to put 2009 in the rear view mirror. Not really
looking forward to 2010 all that much either come to think of it. Sort of feels like we just made it out of a
mine field, somewhat bloodied but still standing, only to look up and realize there's another huge mine field in
front of us to navigate through. Kinda takes the "Happy" out of "New Year". But as much as it sucks, we realize
we are lucky to still be in the fight. Far too many new Angels this year."
Love, and "100% hope",
Norma and Paul
DECEMBER 26, 2010
Hi,
How was our Christmas Day?? Ummmm, different. Santa did manage to find Ryan at the hospital so he woke up to a
bunch of presents under our little table top tree. Ryan actually noticed them around 3 in the morning when he
got up to pee. He saw them, smiled, looked at me and said "Merry Christmas". Paul and Matthew came down later in
the morning of course with more gifts from home. Ryan got several of the Harry Potter collectibles he wanted and
a new acoustic guitar. Matthew actually WANTED clothes this year so he got some new items including new Nike's
to keep up with his feet that are growing at about a size a month!! And I got a new camera to replace the one
stolen at the Ronald in NY. Unfortunately, all of Paul's gifts are hidden at home, so he has to wait till I can
get there and wrap them up. Along with a couple more things for the boys, so we'll have a 2nd Christmas
celebration when we are all home again.
A HUGE thank-you to Donna and Jim who came by for a visit and really brightened up our Christmas. Another HUGE
thank-you to Jim's sister Anne who sent them here with the biggest basket I've ever seen filled with gifts. All
very, very much appreciated!
Medically, all in all, Ryan is doing fairly well. He still has quite a bit of pain in that jaw/neck area. They've
upped the dosages on his PCA pump 2 or 3 times now and he still never puts the pain below a 3 or 4 on a 1-10
scale. He gets an occasional fever, but not very high, which is good. This is a pretty serious bacteria we're
dealing with but the best news is that so far his blood cultures taken on the 24th and 25th have NOT grown
anything. They need to do a culture every day and the worst part is that they cannot use the existing IV's in
his arms to draw these. It has to be a "fresh stick" each time until he's gone 72 hours with negative cultures,
so one more to go. Then they can start using the IV lines to draw. A less than cheery woman from Phlebotomy came
up to do the draw yesterday, unannounced to me. She just walked in and started setting things up with no
explanation. I had no idea the existing lines wouldn't be used. Let's just say I think she was PO'd at having to
work on Christmas. Not only could she not get the vein, she was completely unapologetic and had NO bedside
manner at all. I sent her packing with a "and don't come back" after she tried to put the OPEN Band-Aid that
fell on the floor on my neutropenic kid!!! She actually looked annoyed at me when I stopped her. B-bye!!! I
think my psycho cancer mom reputation has grown juuuust a bit. Thank goodness Paul and Matthew showed up shortly
after this episode because Ryan and I were both pretty upset by the time it was over. So the standing order is
NO ONE comes near him with a needle unless it's the IV team, who I have to say are AWESOME!
Today I asked the docs about some IV nutrition. He has not eaten a thing since Tuesday night, partly because he
has no real appetite and partly because he can't open his mouth much due to the jaw pain. We have to wait until
the dietary people are in tomorrow to get that going. I also asked about some PT for him. Being in bed so much,
he has gotten weaker. He is on precautions which means he is confined to our room and can't walk the halls for
exercise. We don't want him getting even weaker as I think we'll be here a while. His white cell count was only
a dismal 0.04. He hasn't needed platelets since the procedure on Christmas Eve which is good. Of course he got a
total of 16 units that day, so I would hope he hold on to a few for a bit!!
And lastly,
This past year has been filled with many ups and downs. We want to thank everyone who over the past year have
supported us with many gestures of kindness, help and generosity. It's often difficult to keep up with individual
"thank-you's" but please know that every note, gift, call, e-mail or gesture of any kind is deeply, deeply
appreciated and we want to acknowledge everyone's kindness.
We hope everyone had a great Christmas. Our was, as I said, "different" but we were all together and that's the
most important thing.
The snow is falling.....we're supposed to get buried!
Love and "100% hope",
Norma and Paul
DECEMBER 24, 2010
Hi,
Needing lots of prayers for Ryan today. They just told us that they've pinpointed Ryan's infection to a staph
aureus, one of the nastier types of course. This means that they will need to take him to surgery to remove his
medi port in his chest. It's been there since 2005. Bacteria can stick to the line and be very
difficult/impossible to clear with antibiotics, so out it comes.
To further complicate matters, his platelets are still very low, hanging in the teens with daily transfusions. So
they'll need to pump him up significantly with platelets before surgery. Barring anything unforeseen, this should
happen today. Not our usual Christmas Eve doings.....
Just a quickie.
They didn't take Ryan into surgery till around 6 p.m. Had to give him platelets first and frankly I don't know
what the other delays were, but it was a stressful day of waiting and waiting.
All went fine in the end. The port is out. We are back in his regular room at Children's. He is still sad about
missing Christmas at home, but we've been tracking Santa on NORAD which he enjoyed, though we're having trouble
figuring out the logic of Santa's travel pattern.
Thank-you to Uncle Michael and Autie Mary for keeping us company this afternoon and evening, playing the waiting
game with us. Also, thank-you to the Shermans for the SKYPE call this afternoon. You have no idea how much that
cheered him up!!
Thinking of so many of our dear friends who are without their child this Christmas. Ours is not the Chrsitmas we
envisioned, but we are certainly counting our blessings nonetheless.
Merry Christmas!
Love and "100% hope",
Norma and Paul
Pray, pray, pray.
DECEMBER 23, 2010
Hi all,
So Ryan's blood cultures taken yesterday have grown out a gram-positive bacteria. For the blissfully ignorant,
gram positive bacteria include staphylococci ("staph"), streptococci ("strep"), pneumocci, and couple other
things. None of which are any fun even when you have an immune system, never mind when you don't. By tomorrow
they should be able to better pin point which of these sub strains he has and tailor his antibiotics
accordingly. Today they added vancomycin to the mix of antibiotics as it covers a lot of nastier stuff. I'm told
a gram positive is more easily treated than a gram negative. Funny thing is, in all these nearly 7 years, with
all the neutropenic fevers he's had, he's never grown anything out of any cultures. Rather remarkable, but I
guess the law of averages finally caught up to him. He's also never missed being home for Christmas either. Oh,
well.
His jaw pain was better last night but was worse again today. It's also looking puffier. He has trouble turning
his head side to side or up and down because of the neck pain. They're going to go back and take another look at
the CT with the radiologist. They thought there was some subtle changes or "stranding" which could indicate
infection. He simply doesn't have enough white cells to create an abscess, which is an accumulation of white
cells that have zoomed to a site to fight an infection.
The fevers are continuing as well and that's not good. He got both a platelet and red blood transfusion
yesterday, but today both of those counts were still low. He may get both again today but they'll recheck his
counts at around 5p.m. to see if the earlier labs were accurate or thrown off by his level of hydration. His ANC
is still zero but his overall white count was up from 0.03 yesterday to 0.26 today.
On the plus side, he got up and went to the playroom today and we played Monopoly for a while. This the doctors
took this as a very good sign. If he was feeling and looking more sickly, they would be much more worried the
infection was worsening or that he wasn't responding to the antibiotics.
There is still the possibility of a Christmas furlough, but he would need to show a lot more improvement before
then. But he is still very sad at the prospect of being here instead of home. And he's sad that Dad couldn't
visit because he has a nasty cold. UGH!
Well, just keep praying I guess.
Love and "100% hope",
Norma and Paul
DECEMBER 22, 2010
Hi everyone,
So, as most of you already know, Ryan spiked a fever and was admitted to Children's Hospital today. It's
been a long and (literally) painful day. Overnight last night Ryan started having pain in his lower right
cheek/jaw line and radiating down to his neck along with a low grade fever. We had an early morning
appointment anyway at the Jimmy Fund Clinic and once we got there the pain got progressively worse,
hitting a 10 out of 10 on the pain scale at one point. He needed several doses of dilaudid which helped
but never completely alleviated the pain. Keep in mind he still has the fentenyl patch too. His fever
never went away either, even with Tylenol. Not a good sign. And of course his ANC is a big fat ZERO. With
the jaw pain, swelling and fever they worried about an abscess as well as always worrying about disease
progression. So a CT was done of his jaw and neck. Preliminary report was negative for both, which is
very good news, but still leaves us not knowing exactly what's going on. He was given two different IV
antibiotics (which he will get around the clock), a bag of platelets and he was then transferred over to
Children's. This evening, we added nausea and vomiting to the fun fest. His tummy HAD been fine since
yesterday morning. *sigh* His pain was difficult enough to manage that they actually put him on a PCA
pump which gives him 1 mg of dilaudid every hour plus he can push the button for a rescue dose every (I
think) 10 or so minutes if needed. The good news is that it has worked well and he says now his pain is
almost all gone. But he's hit the button about 6 times. He'll get a red blood transfusion tonight as
well, which I hope will perk him up a bit.
So, here we are. Three days till Christmas. With no counts. And a fever. And a likely infection of some
sort in his jaw. Needless to say, Ryan cried when he learned he was being admitted. He knows the date.
And the typical length of his neutropenic hospital stays.
But who's to say what Christmas "should be". We all have the idealic image of a "merry" day of family,
friends, fun, gifts, and feast. Images drilled into our minds by movies and TV ads of what it should all
look like. What makes a perfect Christmas Day? As I contemplate the likely possibility of Ryan being in
the hospital for Christmas, I'm trying to realign what will/should make it a special day, if not perfect.
Isn't it different for everyone anyway really? Just making the best of what you've got, the hand you've
been dealt. We will be together, at least the four of us, no matter the setting. And there will be
presents. Not so sure about the feast, but we'll figure that out.
BUT, we're still not giving up hope of getting out of here either. IF he is stable, IF he has no fevers,
IF his cultures are negative, and IF we can maybe be allowed to do some IV antibiotics at home, PERHAPS
they will spring us at least for the day. We'll see. They've been known to give a few hours furlough but
we'll shoot for a good full day. I'd really like Ryan to wake up on Christmas morning at home as he has
done every other Christmas of his life. I'm planting the seeds now to get the Powers That Be used this
idea. We have 3 days to work on them, assuming he meets all of the above criteria. Of course, we can't be
reckless with his health and safety, which obviously is of most importance.
Many, many thanks to all who have responded to the plea for blood and platelet donations. Ryan is tearing
through platelets at a pretty good clip, as are many others.
Thank-you also for all your prayers for Ryan, all our NB Warriors and Angel Families.
Merry Christmas to all and to all a good night.
Love and "100% hope",
Norma and Paul
DECEMBER 21, 2010
Hi all,
Ryan was discharged from Vermont Children's Hospital on Saturday after his chemo was completed. He was
feeling much, much better with his nausea under control though IV meds. Early Saturday morning I raced
back to the Ronald to shower, pack up and clean up the room so that when he was ready, we could just jump
in the car and head home, which is what we did. It's a ridiculously LONG way from the inpatient area to
the garage so I put Ryan in a wheelchair as he was fairly weak from all the upchucking and a little
wobbly from all the IV ativan and benedryl. He slept most of the way home and ate a little bit once home.
We had arranged for him to be on IV hydration overnight at home as well as IV ativan and IV zofran to
keep everything under control. All those supply boxes with pumps, tubing, flushes, etc. were piled up in
the kitchen and the fridge was loaded with all the hydration bags and meds. Sunday was a good day. He
felt well and we started the double GCSF shots to hopefully prevent an extended period of ZERO white
count this time around. Sunday night we had a great home cooked meal which he (we) really enjoyed.
However, about 20 minutes after dinner he through everything up. No reflection on my cooking of course!!!
Ha-ha.
He was petty good overnight and I got up at 3:30 a.m. to give him his IV zofran and a oral compazine to
hopefully prevent any backsliding. But that didn't last long and he woke up about 5:30 a.m. vomiting. It
got continually worse as the day wore on, despite all the IV meds. G-r-r-r-r-r-r!! We had a clinic
appointment at 1:30 p.m. and by the time we got there he was puking every few minutes and felt horrible.
His counts were a dismal 17 for platelets and 50 for ANC. Tanked up on platelets and got more anti-nausea
stuff. He slept for quite a while but woke up nauseous again. More IV zofran and now they added an oral
med, Marinol. That seemed to fix him up and we left Jimmy Fund at 5:45 p.m. It had been snowing all
afternoon with not much accumulation but enough to put the city in traffic gridlock. It took us almost an
hour to go about 1/2 mile. Those of you familiar with the area, that was when we passed Fenway......an
hour after leaving the Dana Farber building. UGH! Our usual hour long commute home (1 1/2 hours in rush
hour) turned into a 3 hour and 15 minute traffic nightmare. We got home at 9:00 p.m. Ryan slept most of
the way. Again he had a good nigh overnight with me getting up 3 times to administer meds. But again this
morning after being up a few minutes, the nausea returned. *sigh* I got a Marinol in him and IV zofran
but he was still nauseous. They only other thing I had that helps is benedryl so he took that and is now
snoozing away on the couch.
The upside of him being so snowed by the meds is that I might be able to get some wrapping done while he
sleeps (and sleeps and sleeps).
Hopefully, we can keep things under control and get through Christmas without him feeling yucky, without
him being zonked out, and most importantly, without any.......nope.....can't even type the word. Won't
tempt fate. But you know......the OTHER "f" word.
As I've mentioned in previous updates, our friend Nick Franca is having a very, very rough time
right now. Tomorrow begins a special day of prayer for Nick. Here's his mom's entry about it: From noon
on Wednesday 12/22 - noon on Thursday 12/23 we are signing up people to pray for a half an hour without
ceasing. If you are a person of faith and want to participate.... There was an e-mail address to contact
the person coordinating to receive a "slot" but I figured I'd post this so anyone wishing to just take a
1/2 hour out of your day tomorrow to add your prayers to others, without officially signing up, can't
hurt. If you would however like to contact the coordinator to sign up, go to Nick's CB page link above
and scroll back to the Dec. 19th journal entry. Of all the gift giving you will do this Christmas, this
gift trumps them all.
And feel free to take an extra moment or two of prayer for Ryan, also having a tough go of it.
We were heartbroken to learn that another little friend I've mentioned in recent updates became an Angel
Sunday night. Please pray for Christopher
Mullen's family.There is no good time to lose a child, but 6 days before Christmas is especially
cruel. As I sat in the Jimmy Fund Clinic yesterday it was very emotional realizing I'll never see them
there again. Or Ethan Smith. And so many others. So many....too many parents we know with aching hearts.
As the final frenzied countdown to Christmas Day begins, please stop to count your blessings, hug your
kids, bake cookies, watch Christmas movies together (Ryan's favorite), and ratchet down the frantic pace
to just enjoy spending time together. The special time you spend with your kids is what they remember
forever, not what was under the tree. Do you remember what you got when you were 6, 7, 8 or 9??
Merry Christmas.
Love and "100% hope",
Norma and Paul
DECEMBER 16, 2010
Hi everyone,
The week started off great, but has gone downhill. Ryan started chemo on Tuesday and all seemed fine.
Wednesday morning he was nauseous and pukey so at the clinic he got extra IV anti nausea meds and some IV
hydration and seemed fine. Was a little nauseous and puked once back at the Ronald, but then was fine
overnight and slept well. This morning he woke up at 6:30 a.m. nauseous. He started vomiting soon after
and it just kept getting worse and worse. He couldn't keep any of the oral anti-nausea stuff down long
enough for it to work. He was just getting more and more sick and was beyond miserable. It was so hard to
watch and I got SO angry that this was happening again. God got a heck of an earful this morning and it
wasn't pretty. Seems no matter what I pray for, the opposite happens. I'm done.
Anyway, Ryan's clinic appt. wasn't until noon but I called over there to get him in earlier. We got there
about 9:00 and by that time he was SO miserable and weak that I had to get a wheelchair to bring him from
the garage to the clinic. It took LOTS of IV meds and several hours for him to feel better. He also
started with the high blood pressures again! It was a much worse episode than the previous day. Dr.
Sholler was concerned that we wouldn't be able to keep him hydrated and feeling good overnight, so the
decision was made to admit him so they can keep all the IV meds and hydration going around the clock. So
here we are on Baird 5 of Vermont Children's Hospital. Ryan has now been inpatient in 4 hospitals in 4
states. It was just a week ago today that he was released from Boston Children's. This is NOT where we
want to be 9 days before Christmas.
He is presently sleeping......pretty snowed from all the meds.......but at least he's not puking. He even
ate a couple of gummy lifesavers a while ago. We have a private room which is good, except that it is a
tiny shoebox of a room. But we'll take that over a roommate any day. I'm beginning to get my
claustrophobia under control now.
So as usual with Ryan, there is no obvious reason for this latest episode of nausea/vomiting/high blood
pressure. This is the same chemo he got last round and it didn't bother him in the least, so we doubt
that is the culprit. Could be a bug. Could just be Ryan being Ryan.
It's safe to say that we are all SICK AND TIRED OF THIS SHIT.....to be blunt. Sick and tired of watching
our friends suffer too.
Love and "100% hope", (though pretty pissed off at the moment)
Norma and Paul
DECEMBER 14, 2010
Greetings from a snowy Vermont where we're sporting a wind chill of 11 degrees. B-r-r-r-r-r. It was 54
degrees when we left Groveland yesterday morning. Oh, well. It snowed overnight and we woke up to about 3
inches or so. As an afterthought, just as we were leaving yesterday, I grabbed Ryan's and my boots. Good
call.
So those double dose GCSF shots finally kicked in big time and Ryan's ANC yesterday was a whopping 4,000.
Impressive enough for Dr. Sholler to give the go-ahead to start his chemo today. Another 5 days of
cyclophosphamide and topotecan, which is what he got the last round. The same "low dose" that creamed his
counts faster than you can say "neutropenia". Mind you, his platelets were only a very UNimpressive 9. A
new (and scary) low for starting chemo! I see MANY clinic visits in the near future. But there are some
strategic changes for this round to hopefully address the white count issue. Ryan left the hospital in
Boston last week on oral antibiotics. We will keep him on those throughout the cycle to hopefully stave
off any infections. Fever could still happen though, accompanied by requisite hospital stay. Also,
instead of starting the GCSF at the regular dose at the end of the cycle as is customary, we will jump
right into the double dose in hopes of him not being neutropenic for so long this time. As noted above,
he will undoubtedly need frequent transfusions, especially platelets. Again, please donate blood or
platelets if you can. Supplies are low and demand is high. Info for donating at
Boston Children's: But donating anyplace would be helpful.
Ryan will finish up this 5-day cycle on Saturday. We are VERY, VERY nervous about him getting a fever and
being stuck in the hospital for Christmas. But this cycle has already been delayed. To wait until after
Christmas is just way too risky. So say a few million prayers, novenas, rosaries. Chant and dance around
the ceremonial fire pit........whatever it is you do, DO IT. OFTEN. I wanted him to be prepared, so I
told him that if a fever happened he might be inpatient for Christmas. He burst into tears saying "No
one should have to be in the hospital for Christmas". How true. He was also very upset to learn our
friend Nick Franca will likely be inpatient in NY over Christmas. Please keep Nick in your prayers as
well.
The Nifurtimox which he's been taking continuously has made it's presence known too. Not by hitting his
counts, but with weird side effects. We've pretty much attributed the bizarre pain in his sternum, then
lower rib area to the Nifurtimox, especially since the chest CT they did last Wednesday didn't show
anything that would explain it. Also, he has dizziness, speech issues (like tripping over his words) and
short-term memory loss. That one has been interesting. Imagine living with an 11 year-old Alzheimer's
patient. And it really sucks for me because I relied a lot on HIS memory since mine is so bad. I told him
now he knows how I feel. Anyway, when these things crop up, we usually hold the drug for a day or two or
three and they mostly go away.
Please, please keep praying for Ryan and all our Warriors and Angel families. As Ryan said, no on should
be in the hospital for Christmas, and no one should be without their child either.
Given the recent passing of Elizabeth Edwards, it seems appropriate to share a quote from her. Having
lost a teenage son, she offered this advice to people who know someone who has lost a child or someone
very close to them and is afraid to acknowledge the loss. "If you know someone
who has lost a child or lost anybody who's important to them, and you're afraid to mention them because
you think you might make them sad by reminding them that they died, they didn't forget they died. You're
not reminding them. What you're reminding them of is that you remember that they lived, and that's a
great, great gift.'"
Love and "100% hope",
Norma and Paul
DECEMBER 10, 2010
Hello,
Ryan was FINALLY released from the hospital yesterday after 12 days!! YAY!!! His ANC was only 130 and
usually it needs to be 500 or greater. But Children's changed their criteria a while back to a formula
that looks at the ANC plus the number of monocytes and that number only needs to be above 100. The other
criteria is that he not have had a fever within the past 24 hours and his blood cultures be negative for
48 hours (they were negative the whole time). We had started doubling his GCSF shots the day before, so I
guess that helped. He is still neutropenic though so we need to be careful and vigilant of another
fever. He went home on 2 oral antibiotics. We are in clinic today getting blood and platelets.
I e-mailed Dr. Sholler yesterday to tell her we were being released. She wants us in VT on Monday so she
can evaluate him and decide about the next cycle of chemo, which was supposed to have started today
originally. Not sure if even end of next week is possible with these low counts. His counts dropped WAY
faster than anticipated and he's taking WAY longer to recover than anticipated. Not good, especially with
Christmas around the corner. Pray for a plan that doesn't mess with being home for Christmas!!
So there was an up side to being inpatient. On Monday Ryan met and filmed a PSA with Boston Celtic
Shaquille O'Neil. The PSA is to promote the Boston Celtics MA license plate which benefits Children's
Hospital. No idea when it will air......stay tuned. Shaq was pretty nice.....and pretty huge!! Several
people have told me I need to get Ryan an agent (but NOT Scott Boras!). LOL! Oh, and I still need to get
my t-shirt printed up that says "STAFF".
Many, many of our friends are facing difficult times with dwindling treatment options and progressing
disease. Many more facing their first Christmas without their baby.
As I have before, I'm going to copy a section of another NB mom's post which really nails how we all feel
in this battle. Her son Sal is a brave warrior we met 3 years ago. Here is his mom Silvia's words, which
I couldn't have said better.
".....My own fear of the future is so overwhelming. The fear never leaves, it is always, always there.
There is no such thing as normalcy anymore. Most of our days are filled with laughter and good times, but
the fear and anxiety are always there, you think how long will this last, when will he say something
hurts, did he just grimace when he picked that up? It's so hard to live like this. 99% of you reading
this have healthy children, (3 years ago I did too)....please don't ever take that for granted. Be
thankful for your children's good health, appreciate every second you have with them, no matter how
difficult or trying times might seem. Love your kids with all your heart and remind them how special they
are each day. Be thankful your children can walk, run, go to school....all the trivial daily things
taken for granted....... The past 3 years have consisted of constant daily treatments, toxic chemo's,
experimental (non FDA approved) drugs, hospital stays, many surgeries, pain, lots of pain, nausea,
vomiting, fevers, pain, foleys, radiation treatments, isolation, anesthesia, transfusions, scans,
biopsies, pain, bloodwork 3-4 times a week, stem cell collections, accessing and deaccessing of the port
in his chest continuously, accessing of veins & arteries on all different parts of his body, pain meds,
pain med withdrawal, traveling to numerous hospitals across the country, pain, being away from home for
months at a time, and some extremely life threatening situations. I thank God we have made it thru all
this and he continues to be a very happy child somehow. Every day I thank GOD for making me his mommy....
no matter how difficult our lives are."
Ryan, and all these kids who have been at it for years, have been through all of the above. Poor Ryan 4
years longer than Sal. We know it, but we try not to think about it because it's so overwhelming. But
seeing it all spelled out like that just made me want to cry and realize that people just have no idea
what this life is like for the kids and their families, no matter how many updates you read.
Count your blessings and please continue to pray for Ryan and all our Warriors and Angel families.
Love and "100% hope",
Norma and Paul
P.S. The holiday season is another time that blood and platelet donations drop off dramatically as
everyone is so busy. Please, please try to find time to donate at Children's Hospital. The need for blood
products never ever drops off. More info HERE.
DECEMBER 4, 2010
Hi,
Still here on 6North. Still waiting on those white blood cells, which are a less than impressive 0.1
today but up from the 0.06 of yesterday, which was down from the 0.1 of Thursday. This sputtering up and
down is typical. He's been needing frequent platelet transfusions and a couple of red blood
transfusions. We held his Nifurtimox for 3 days because he was having this weird pain in his sternum and
Dr. Sholler thought it might be a side effect. Pain is still there so we're restarting the Nifurtimox
and trying not to dwell on what this pain could be, especially since he's still on the fentenyl patch
and this breaks through it. But only when he takes a deep breath. Like I said, weird.
Ryan also has a nasty radiation burn on his back where he had his paraspinal tumor radiated in October.
He's never had one before even though he's had tons of radiation. Oddly, it didn't show up until
Thanksgiving (a month later) when it started looking really, really red. Like an extremely bad sunburn.
It's almost the size of the palm of my hand. 2 days ago it started peeling and with him being
neutropenic, we worry about it being another avenue for infection. So they're now putting antibiotic
ointment on it. Also, the IV antibiotics he's still on cover most skin infections. It's not painful.
More itchy than anything else. Other than that he is feeling pretty good, spending lots of time in the
playroom and even getting in some schoolwork.
Thank-you for all your prayers for Ryan and for all our NB warriors. We have a few friends that are in
great need of prayers right now.
Nick Franca is experiencing complications
even before starting the high dose chemo he needs to try to control his progressing disease.
Christopher Mullen, whose disease is
progressing rapidly. Christopher has spinal disease similar to Ryan's but his is robbing him of his
ability to walk and his bladder control. Two symptoms they told us could happen to Ryan.
Ylaria Cazares, who is having pain and extreme
weakness. They are awaiting scan results.
And of course all our Angel families who are facing the holidays - and each and every day - without their
precious child.
About this time 2 years ago, I plagiarized a NB mom friend's post on her son's web page. I substituted
Ryan's name for he son's of course. I came across it again and thought it worth a repeat. Terri, your
beautiful words still touch me.
To my precious Ryan,
If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have
chosen you..
If God had told me "this soul will one day need extra care and needs", I still would have chosen
you...
If He had told me "that one day this soul may make my heart bleed", I still would have chosen
you...
If He had told me " this soul would make me question the depth of my faith", I still would have chosen
you...
If He had told me " this soul would make tears flow from my eyes that would overflow a river", I still
would have chosen you..
If He had told me " Our time spent together here on earth could be short", I still would have chosen
you..
If He had told me " This soul may one day make me witness overbearing suffering" , I still would have
chosen you...
If He had told me, "all that I know to be normal would drastically change", I still would have chosen
you...
Of course, even though I would have chosen you, I know it was God who chose me for you...
Thank you God for letting me be his Mommy.
Love and "100% hope",
Norma and Paul
DECEMBER 2, 2010
Hi,
Ryan was moved from ICU to the regular oncology floor yesterday afternoon. He is MUCH happier in familiar
surroundings and with familiar faces. He lucked out and got his favorite nurse who has been his primary
since the beginning. And I'm much happier to have a shower on the same floor! Unbelievable. When you have
a child in ICU, you really don't want to have to leave the floor for much of anything. Pretty new unit
too. You'd think someone in the design phase could have thought of that.
Of course, Ryan being Ryan, as soon as we got to the floor and they took vitals, his blood pressure was
way high (as opposed to the too low that landed him in ICU). He ended up needing some meds to bring it
down and they've remained a bit on the high side but he hasn't needed more medication for it. He hasn't
had any more fevers and his blood cultures remain all negative which is good. However, his blood counts
are still very low. ANC still zero and he is needing frequent blood and platelet transfusions. He is
complaining of a weird pain in his sternum area when he inhales deeply. Not sue what that's all about but
Dr. Sholler is having us hold the Nifurtimox for today as she has had one other patient complain of
similar pain. Hopefully that's all it is. Unfortunately, his appetite has dropped off big time, so it's a
challenge getting him to eat.
Ryan is up and about today and has already been to the playroom and visited with a therapy dog. A HUGE
Burmese Mountain dog, but as gentle and friendly as can be.
Please keep praying that our stay here will be short, those counts recover soon and he has no further
problems.
Please also pray for our friend Nick Franca,
who is heading to NYC to do high dose chemo to hopefully get his disease under control.
Also, Christopher Mullen. His site
hasn't been updated recently, but he is struggling right now with progression. Running around just a few
days ago he is now in pain and needing oxygen.
It's difficult to put into words how hard it is to see our friends in these situations and their parents
scrambling to find one more thing to try. We know the feeling of fear and desperation.
Many, many others in need of prayers so please remember all our Warriors and Angel families in your
prayers.
Love and "100% hope",
Norma and Paul
NOVEMBER 29, 2010
Hi everyone,
Well it wasn't without a wee bit of drama, but Ryan's Thanksgiving was "GREAT" to use his word. The
drama being that my dad took a fall the night before Thanksgiving and ended up in the hospital. No
injuries really but he needed some hydration and further evaluation. So while it felt not quite right to
have neither of my parents there, nonetheless, Ryan got most of what he wanted.......to be HOME with as
much family as possible present, turkey dinner with all the trimmings, and of course PIES. And we are
thankful indeed.
Bright and early Friday morning, Ryan and I were off to the Jimmy Fund Clinic to check labs (ahhh, no
traffic). We were expecting his counts to crash, and crash they did. White blood cell count of 0.03 so
his ANC is a big fat ZERO, platelets 23 so he got transfused, hemoglobin 8.8. He had just gotten
platelets on Tuesday before he and Paul left VT to come home. So with no immune system, we are on fever
watch. We cannot take Ryan to any public buildings or allow anyone in the house who is sick. The house
is being Clorox-wiped several times a day and we are all Purell-ing obsessively. PLEASE God no fevers,
no infections, no inpatient stays!! He hasn't been home seven full consecutive days since August!!!!
He's really been enjoying spending time with Matthew. They've been playing a lot of Wii and watching
movies. We all had to sit down together and watch the Charlie Brown Thanksgiving special of
course......a tradition we haven't been able to enjoy for the past few years.
**********************
UPDATED
Ryan is now in the ICU at Boston Children's. I started the above update yesterday BEFORE Ryan spiked the
dreaded fever. 102.7, complete with chills and feeling crappy. So off to Children's we went, suitcase in
hand since an admission was a sure thing due to the neutropenia. He vomited once before we left and
again in the ER, which is unusual for him when he gets these neutropenic fevers. The chills was unusual
too.
At the Children's ER the fever went up to 103.3. Ryan got the mandatory IV antibiotics and IV fluids and
Tylenol for the fever. He soon started feeling and looking much better but the fever, though lower, was
still hanging on. A couple of hours later he had his bed on the onc. floor waiting for him. Just as we
were about to head up to the floor, the ER nurse took one last set of vitals. His BP, which had been
fine up till then, was suddenly a scary 77/30. She took it a total of 3 times using 2 different size
cuffs for the automatic and then took it manually. All similar readings. This was real. He had already
gotten a ton of IV fluid, which will usually raise BP, so for it drop at this point was very worrisome.
They ordered more IV fluids......3 more boluses over the next hour or so. This did little to raise his
BP, which at one point hit a a low of 70/21. They also moved him from his regular ER room to another,
bigger room with lots of emergency supplies hanging off the walls and more supply carts around the room
AND one on one nursing. The Scary Room. They're now worried about sepsis, a very serious blood infection
that if not treated very early on, can be fatal in neutropenic kids like Ryan. We've seen it happen.
Quickly. So as the blood is draining from my face, they give another stronger antibiotic and order a red
blood transfusion. He needed the transfusion anyway but they were originally going to wait till he was
up on the onc floor to do it. However, they thought it best to get it in right away. His BPs leveled off
in the low 80's over 30's but obviously still not normal. They now added in the drug dopamine to raise
the BP. This required a peripheral IV line to be placed which is the one thing that Ryan HATES more than
anything. He's just a really tough stick and it usually takes multiple attempts to get it. As usual I
ask for the IV team and as usual am told "Oh, we have great nurses who do this all the time". As usual
they couldn't get it. Finally, the IV team is called in and on what is now the fourth attempt by the
fourth person, the IV nurse gets it right away. *sigh* But anyway, the dopamine worked and Ryan was
weaned off of it this morning and his BPs are holding in the low 100's over 70's without it. The ICU
team just rounded and said that he looks great and if he remains stable, we can move to the regular onc
floor this afternoon or evening. Blood cultures were drawn in the ER as per usual so we wait to see if
anything grows out of them. In the meantime he will continue to receive the 2 antibiotics around the
clock. He has not gotten any more fevers, which is also good.
Well, at least we got Thanksgiving in.
Please pray that this clears up quickly and that Ryan's counts recover quickly so he can go home.
Love and "100% hope",
Norma and Paul
NOVEMBER 21, 2010
Hi everyone,
Okay, I'm getting asked a lot about how scans went this past week in VT. The short answer is reasonably
stable, save for the lymph nodes that showed up on the CT that was done earlier in NY. Still there.
Didn't magically vanish. This reasonably stable evaluation is just from Dr. Sholler and us looking at
the computer screen comparing it side by side to the last ones done in August. The official
radiologist's report is not in yet, which will give us more detail of course. But no big "holy crap"
surprises at first glance. His bone marrows are still positive.....no surprise there either.......and at
about the same degree as last time. Last time being in August, so at least it doesn't appear to be
worse.
With the scans and bone marrows completed this past Thursday, Ryan began the Nifurtimox trial on Friday.
He gets a low dose of IV cytoxin and IV topotecan for five days. The nifurtimox is oral pills that he
takes 3 times daily continuously. Even though this is low dose cytoxin and topotecan, we expect his
counts to crash since they're starting off low, and we expect him to be neutropenic for a good week or
so. He needed platelets on Friday......never before has he started chemo with platelets of 14!! His
hemoglobin was low too so on Saturday he got red blood. To continue his IV chemo over the weekend we
have to come into the peds inpatient floor of the hospital since the clinic is closed on weekends. But
it is as an outpatient, we don't stay overnight. His cytoxin/topo will finish up on Tuesday in clinic.
Generally, this is repeated in 3 weeks, but this being Ryan with the pokey blood counts, we're expecting
it to stretch out to 4 weeks, which brings us to the week before Christmas into Christmas week. After
that second round, Ryan will be scanned again to see where we're at.
Ryan wants an "extra special Thanksgiving" so we are working on that!! He remembers that last year he
had just been released from the hospital the day before Thanksgiving after 37 days of hell, and still
feeling yucky and unable to eat. And Paul and I were "digesting" the scan reports that said it was all
for nothing and we'd gained little if any ground on his disease. We attempted to join the festivities in
the dining room at the Ronald, but that lasted about 15 minutes. *sigh* This year, though our holiday
dinner table will be without my mother for the first time, which is hard, we are still thankful that the
rest of the family will be home and together for Thanksgiving (except for my niece who is in
Italy......so unfortunately, the pie quality won't be as good). I'm heading home today (Sunday) to get
things rolling and Paul is coming up to VT take over. He and Ryan should be able to hit the road on
Tuesday.
We're shooting for Norman Rockwell this year, SO NOTHING BETTER SCREW IT UP, DAMMIT!!
And while most people are bustling about getting everything ready for the holidays, this is when we get
all reflective. Every holiday season (or birthday or milestone) no matter how hard we try to suppress
the thoughts, we wonder, as do many cancer parents, "will this be the last Thanksgiving, Christmas, New
Years....etc." Unfortunately, it's not even an unreasonable thing to think about. So many of our little
friends have passed in the last year. Their parents now bracing and struggling to get through the
holidays without their precious child. Yet still trying to make it special for their other child(ren).
Please pray for these parents and siblings, be it their first, second, third, fifth or whatever number
of years of this unbearable loss. With that in mind, please remember to actually take a moment or two to
reflect on all that YOU have to be THANKFUL for, especially the HEALTHY KIDS in your life.....your own,
grandkids, nieces and/or nephews. Even the ones you sometimes want to duct tape to a chair! Even the
sullen, moody teens.
As a trade-off, I'll give you a pass on the irritating adult dopes in your life. You don't need to be
thankful for them. I can't manage that either. Takes too much energy and patience that was sucked out of
me a long time ago. On a good day, tolerance is the best I can do. Yes, I probably do need therapy.
So, on that quirky note, Happy Thanksgiving to all!!
Love and "100% hope",
Norma and Paul
NOVEMBER 12, 2010
When the world says, "Give up," Hope whispers, "Try it one more time." ~Author
Unknown
We weren't told to give up, but it wasn't a pleasant conversation we had yesterday with Dr. Modak. They
discussed Ryan at great length on Wednesday at the weekly tumor board meeting. His opening statement
was "So it all depends on how much you want to do at this point." Paul was unable to be in NY and I
wasn't sure what tone the meeting would take, but with that opening statement, I asked if we could get
him on speaker phone. So that is indeed the question. What do you do with a child who has marrow
disease, boney disease, soft tissue disease, chronically low counts, prone to miserable and life
threatening side effects, is resistant to chemo, has disease that is progressing, etc., etc. His low
counts disqualify him from most trials. Despite the fact that we have one more bag of stem cells, they
feel high dose chemo is too dangerous and would make him too sick and miserable with little hope of any
real gain. Risk vs. benefit. Very high risk with very low benefit. Oh, and a CT scan last week showed
some new disease in his lymph nodes under his arm. Not a rosy picture is it.
BUT, this is The Amazing Super Ryan. A kid who has "100% hope" and is "the most hopeful person on the
planet" by his own description. A fighter. A "remarkable", and "very special boy" as Dr. Modak said. In
September when we were struggling to get his surgery scheduled but his counts weren't cooperating, I
sat down with Dr. Cheung to discuss Ryan and he said that Ryan is "very unique. He doesn't follow any
textbooks. He really blazes his own trail."
So if he hasn't followed any textbooks so far, why listen to what they say anyway.
In the end, we all agreed that our best option right now is the Nifurtimox trial in VT. It's what we
were pretty much planning on doing anyway after his surgery I (not anticipating the lengthy stay in NY
for radiation). But we obviously wanted to know all our options before deciding on our next move. Turns
out, that's pretty much it. Decision made for us. We did talk about a few other things at other
hospitals around the country, but for one reason or another, they either weren't a good choice at this
time or he wasn't eligible. All Sloan had to offer was irinotecan/temedar/avastin. He progressed
through irino/temedar so that wasn't an attractive option.
We are home now and the plan is in motion to be in VT next week for scans and bone marrows and get
started on treatment. Dr. Modak e-mailed Dr. Sholler after our meeting yesterday and she called me on
my cell phone as we were driving home. Her goal is to get things going quickly so Ryan can be home for
Thanksgiving. LOVE her!!
Difficult things take a long time, impossible things a little longer. ~André A. Jackson
We were in the Jimmy Fund Clinic today for platelets. I went out and got us lunch. Mine was some Chinese
food that came with a fortune cookie. As we were about to leave I asked Ryan if he wanted the fortune
cookie and he said he did. I was packing up our stuff and not paying attention but saw the little paper
with the fortune on it sitting there and asked Ryan if it was a good one. He handed it to me and it
said: "Do you believe? Endurance and persistence will be rewarded." My jaw hit the floor. Now that
one's a keeper! Stop rolling your eyes. I know it's a stupid fortune cookie. But if you were me, you'd
take encouragement anywhere you can get it. I may have it blown up and framed!! Or maybe settle for
laminated to carry in my purse.
Science and medicine will not determine Ryan's outcome. God has the final say. So nothing is impossible.
It just might take a little longer. Ryan has surprised the experts before and he will do it again.
Keep PRAYING and keep BELIEVING.
Love and "100% hope",
Norma and Paul
P.S. A few of our friends to keep in your prayers too. Sal Vanni, Ryan Regan, Nick Franca, Christopher
Mullen.
NOVEMBER 9, 2010
Ryan is looking and feeling pretty good, aside from some fatigue still. Dr. Kushner commented last
week that "he looks so great" (subtext....."for a kid who is SO FREAKING sick"). Ryan's a bit thin,
but nothing drastic. Most of his hair is gone, but he wears a hat a lot of the time so people don't
notice. He walks slowly. If he squats down or kneels down, he struggles like an 80-year old to get
back up. Same thing with stairs.....like an old man. Yet, on Sunday he walked about 17 blocks to
meet his friend Lindsey and her family who had come to NYC for the weekend. It was slow going, but
he did it. I offered him a cab a few times but he refused. The Amazing Super Ryan. Ya just gotta
love this kid. We did stop twice (in churches) to rest. One was a Catholic church where we rested,
then lit a couple candles before the mass started and left. The other was an Episcopal church where
we went in just as services had already started. So we stayed.....two baptisms and a confirmation
later we left to meet our friends across the street for a GREAT lunch at Serendipity (frozen hot
chocolate....OMG....soooo good). We're so glad we were able to get together with them!! After
lunch, we all headed down the block to Dylan's Candy shop, which is quite an experience if you can
imagine a 3-story candy shop!! Thank-you Procurot family for a fun afternoon!! Ryan did opt for a
cab ride back. However, the NYC Marathon was still in full swing and we were unable to cross 1st
Avenue to get back to the Ronald. SO, thank-you Barbara for letting us crash at your place for a
couple hours!! BTW, congrats to all the runners who ran for Fred's Team which raises money for
Sloan, including our own Dr. Kushner. The last 3 years Ryan was inpatient on Marathon Day. In 2007
and 2008 we wheeled him down in a wheelchair to the street to watch for a bit. Last year he was on
the verge of being shipped over to the ICU. And his year??? The Amazing Super Ryan was doing his
own 17 block marathon!! Just as impressive and remarkable in my book! And I suppose I could stretch
the marathon metaphor a bit more to include the nearly SEVEN YEAR marathon he's been running! Have
I mentioned lately how AMAZING he is???? Oh, and the teacher he works with here at the hospital for
a couple of hours every day absolutely loves Ryan. She is so happy to have an eager student who is
usually there waiting for her every morning. A lot of the kids are good at evasive tactics to
escape doing schoolwork at the hospital..... obviously not a difficult setting to play the sympathy
card in. But not Ryan. He gets every minute in that he can. Have I mentioned lately how AMAZING he
is????
Ryan will finish radiation today and we expect to be heading home on Wednesday. We also expect
they'll want us back next week for a work-up, but we'll see what they say. He hasn't had an MIBG
scan since early August. Not sure we even want to see THAT. We have no idea what our next treatment
course will be.....or where for that matter. Our nerves are about as shot as they've ever been. As
evidenced by the the fact that I nearly assaulted a woman in front of me in a check-out line at
Slaon's cafeteria last week. She had the audacity to not have her money in hand and ready to pay.
As she was endlessly (to me) digging in her purse for her wallet AFTER everything was totaled up,
AND MAKING ME WAIT, I had to use all my self control not to smack the back of her head and scream
at her. Yup, getting a little frayed around the edges. Recently one of the nurse practitioners said
to me "You look stressed. Is there anything we can do for YOU?" Huh, me? Seriously?? Ummmm, how
about FIX MY KID!!!! Then maybe the tired old sea hag you see in front of you will be magically
transformed into a happy Disney Princess, complete with singing woodland animals at my feet. Okay,
I didn't really say that. And maybe Disney princess is pushing it. How about a reasonably likeable
Disney character......say the forgetful but seemingly happy Dory from Nemo?? But anyway, I just
smiled and said "No, I'm fine." *sigh*
One more thank-you (in a long list) to Barbara who arranged an appointment for me at a salon to get
my hair done yesterday. First time in over 6 months so it desperately needed it. Now the tired old
sea hag is looking a bit more presentable. LOL! And thank-you to the Francas for hanging with Ryan
at the clinic while I was gone.
Please keep praying for Ryan. This disease is relentless and he needs for something to work for him
SOON. Pray for guidance for his doctors and for us as we figure out what to do next. Many of our
friends facing tough times as well.
Love and "100% hope",
Norma and Paul
NOVEMBER 2, 2010
Hi,
One year ago yesterday, Ryan was in the ICU at NY Presbyterian Hospital being intubated and battling
pneumonia with no immune system. What a horrible, frightening time that was. So we are especially
grateful that this year, we were able to make it home for the weekend so Ryan could FINALLY got to go
trick-or-treating in our neighborhood for the first time in AGES with our good friends the Weavers, his
God-cousin Victoria and of course Matthew. Ryan dressed up in his Harry Potter Quidditch
uniform.....he'd already done the regular Harry costume in NY (twice) so was ready for a bit of a
change. Plus this costume was warmer. The weather was soooo cold. Between the cold and his fatigue from
all the radiation and chemo, we had to cut the night short. But he had fun anyway and was very happy,
which was so nice to see. Later in the evening a few more of his friends stopped by the house which he
really enjoyed. Smiles, laughter, friends, candy........what a difference from last year!!!!!!!!!!!
Bright and early Monday morning it was back to NY. He's continuing his radiation all this week up until
Tuesday of next week. He got a red blood transfusion today which I thought might perk him up a bit, but
he's still quite tired. HOPING it's just the effects of the radiation. Platelets and ANC were
adequate.
Still trying to sort out what our next course of treatment will be. The team here in NY meets this
afternoon so hopefully tomorrow they will have some options for us. Or, maybe it's back to VT, who
knows. Aside from the fatigue, Ryan has been feeling pretty good. He's still on the fentenyl patch but
has had no breakthrough pain at all. He's eating fairly well.
It's getting to be that time....
If you like to send those holiday cards featuring a photo of your cute little one(s) (or pets) please
consider using
Cure to the Kids Holiday Photo Cards. All proceeds
will go to fund research through the Neuroblastoma and Medulloblastoma
Translational Research Consortium. Simply upload your photo, create your own greeting and help save
lives! And please share this idea with friends and family. And/or, The Bop Shop at Cafe Press The Bop Shop at Cafe Press has holiday cards as
well, plus other gift-giving and awareness items, the proceeds of which go to Band of Parents for NB
research at MSKCC. And don't forget Cookies for Kids Cancer (www.cookiesforkidscancer.org) to stock
your holiday dessert table with yummy cookies! On the "billing and shipping information" page, there is
a pull-down menu allowing you to direct your donation to Band of Parents Neuroblastoma Fund at MSKCC
(among other options). Otherwise, it will go to the general fund.
Many, many thanks to everyone who has helped and supported us during this
extra long stay in NY. I need to get many personal thank-you's out, but in the meantime, please know
that we deeply appreciate EVERYONE's kindness.
As always, thank-you for your prayers for Ryan.
Love and "100% hope",
Norma and Paul
OCTOBER 27, 2010
Hi all,
It's the last week in October. I should have known we wouldn't escape the month without at least one
sucker punch.
Ryan started having pain in his upper right leg Sunday night. It got MUCH worse Monday morning. He was
limping heavily and could not walk the 5 blocks to the hospital so we had to take a cab. Mind you, he
still has the fentenyl patch on and was still having this intense pain. It sort of originates mid-butt
cheek and wraps around to the front. After lots of questions and exams by the NB nurse practitioner as
well as 2 docs from Neurology, they decided to a) double his fentenyl dose; b) start him on the steroid
dexamethazone (to reduce inflammation); and c) get ANOTHER spinal MRI (4th one since mid-August and 2nd
in 10 days). During the day and evening on Monday he was requiring dilaudid rescues. We've known for
some time that he has boney disease in his lumbar spine going back to The Big Relapse of '08. It has
grown into a soft tissue thing that is now messing with nerves. Sound familiar?? I waited most of
Tuesday to learn that the MRI confirmed that in those 10 days since the last MRI, it had progressed.
Very, very slightly, but because of where it is, it is causing pain. If it were almost anywhere else in
his body, it wouldn't, but with all the nerves coming off the spine.....well, you get the idea. As Dr.
Kushner said (in our 12 second conversation in the clinic pantry) because of the location, even the
tiniest fraction of increase is going to cause symptoms. He also said he'd confer with the radiation
oncologist to see if she could offer any help. I doubted it since we've been told a hundred times how
his spine has already been radiated to the max. However, we caught a break. This lowest area of the
spine has only been radiated once when he had the full cranial/spinal radiation after his brain
relapse. So, we met with her this morning, had the simulation done a couple hours later AND had the
set-up and first treatment this evening. He will get a total of 10 treatments, once a day (week days
only). The other good news is that either the increased fentenyl, the dexamethazone or, more likely,
the combination of the two, have reduced the pain to practically nothing. As early as Tuesday morning,
he felt MUCH better. I'm glad they got the radiation going that fast, but it also freaks me out to
think that they thought it was that urgent. This affected area of the spine controls bladder and bowel
function, which so far have been fine, and we certainly want to keep it that way.
Overall now Ryan is feeling pretty good. Although he was quite upset that he had to get MORE tattoos.
Three to be exact. Well, three areas I should say. Because of all the other tattoos he has and the fact
that they've already used 2 colors to differentiate them for the previous radiation, they needed another
way to tell these new ones apart from the old. So they do double dots. Each "spot" of tattoo was a
double stick of the needle. It really stings and we were both in tears by the time it was over. The
techs were very nice and I think they felt bad for Ryan. One of them gave him a cupcake from a very
well known bakery nearby. They are HUGE and they are EXPENSIVE (you know the place Caryn). Red velvet.
YUM He also commented that Ryan did a better job holding still than most adult patients. The Amazing
Super Ryan. Of course!! I have to say his spirits took another dip when he found out we'd be stuck here
another week and a half. But we will sneak home over the weekend for Halloween, returning Monday in
time for his afternoon radiation treatment.
The final treatment of the OTHER radiation to the OTHER paraspinal tumor was this morning, so that part
is done. He has been handling the chemo well this week. Just a wee bit pukey yesterday morning. His
platelets have been holding in the 30's without transfusion.....not bad for him. Hemoglobin low but not
to the transfusion point yet. White count respectable.
Now we have to figure out what treatment will follow this. We had hoped to enroll him in a particular
trial in Boston, but his lackluster platelet count precludes him. They are researching what else is
available for us. VT is always an option to do the Nifurtimox study, but we are thinking now that we'd
like be home for a bit if at all possible, especially through the holidays. There is no ideal treatment
choice, so we just have to weigh what will keep him stable or improved yet not be too harsh, yet will
not allow progression AND will allow some home time.
This time last year, Ryan was just starting to have his breathing/lung issues which degenerated into
that horrible pneumonia nightmare. So, all in all, I guess October has been kinder to Ryan this year
than in past years.
We are yet again mourning the loss of another friend. Tuesday morning Ethan Smith became an angel. We've
known Ethan for years, first meeting him when he and Ryan were doing 3f8 together years ago and most
recently in Vermont. He died from side effects of treatment. He fought so bravely and his mom Amy is
simply amazing with all the research she did on treatment options and how staunchly she advocated for
Ethan. Please pray for her and Ethan's sister
Sierra.
Ryan needs LOTS of prayers. This thing on his spine progressed thru the chemo he's been doing. His
overall disease burden is frightening. We HAVE to find something that will work for him and find it
SOON.
Love and "100% hope",
Norma and Paul
OCTOBER 23, 2010
Hi everyone,
Okay, we're in the October Red Zone. The third week of the month is usually when the #&*@ hits the fan
and then it's downhill from there. So far, so good though. Fingers crossed!
Overall, Ryan is feeling pretty good. This past Thursday was his radiation set-up and first actual
radiation treatment. He'll get two more mega blasts next week along with chemos that are good
sensitizers for radiation. I asked what damage may be done to good tissue that is in the beam's path
and was told that he's being hit with multiple beams from multiple angles. The individual beams do not
do too much on their way to the tumor. It's the point of convergence where all the beams come together
that the desired blast happens and why we did all the super high-tech computerized planning. The entire
tumor will be hit and it may be many weeks before the full therapeutic effects are realized. He may
have some minor esophageal irritation but little else as far as discomfort although sometimes a tumor
that is being attacked will swell a bit before it starts to die, which can cause some pain. But he
still has his fentenyl patch which we'll keep on at least until the end of this treatment next week.
Friday's counts weren't great. Platelets only 29 and ANC only 700 and hemoglobin only 8.8. He got a
platelet transfusion to cover him over the weekend and today I gave him a GCSF shot for the white count.
On Monday he's supposed to start chemo.......not good numbers to be starting off at. I hope they don't
tell me next week that they want to delay it.
Today the RMH had trip to a farm in New Jersey where we got to pick apples and pumpkins, find our way
through a corn maze, and go for a wagon ride, etc. The weather was perfect and although he's pretty
pooped now, Ryan had a lot of fun. Tomorrow is a Halloween Party. Glad I remembered to bring his
costume.
So we've been at this cancer thing so long now that it is our "normal". We don't often think about it
being out of the ordinary for Ryan to have scans, transfusions, his port accessed, lab draws, late night
rides to the ER, etc. It's his/our routine. But every once in a while something triggers the
realization that our "normal" is in fact wholly, incomprehensibly, unfathomably and indescribably
ABnormal for any child.......or any family. For me, it was the radiation this time that has stopped me
in my tracks wondering yet again "is this really my baby's life??" Sometimes it's the chemo and
sometimes it's surgery that give me that out of body experience. But radiation, at least on the
outside, looks so benign!!! He just lays on a table, something invisible happens, and we leave. Yet, we
are (on purpose) bombarding his body with toxic radiation.......and mega radiation at that. Something
that ordinary sane people avoid at all costs. Maybe it was the doctor who was going over the possible
side effects starting off with "People who have had as much radiation as Ryan has had
already......blah, blah, blah" Then I start thinking about the radiation in 2004 to his original tumor
bed (abdomen), 2005 to his legs and arm, 2007 to his brain and spine, later in 2007 to his rib, 2009 to
his spinal tumor, 2010 to his arm (remember the fracture this summer?) and now this round. Gulp! It
sickening, but we're desperate as it is the only option right now to address this tumor in his back.
Have I mentioned lately that CANCER SUCKS!
And once again, our hearts are broken at the loss of another warrior and friend. Friday morning Evan
Lindberg earned his angel wings and his freedom from cancer. A few short weeks ago in September Ryan and
I joined Evan and his parents for a trip to FAO Schwartz where Evan was a ball of energy and pretty
much running circles around Ryan. Evan entertaining us with his "happy dance" that day will be how I
will always remember him. Please keep his heartbroken parents in your prayers. As they were leaving the
Ronald to take Evan home a couple of weeks ago, I gave his mom a hug and she whispered in my ear "Keep
fighting". We will indeed keep fighting with everything we have.
Love and "100% hope",
Norma and Paul
OCTOBER 18, 2010
Hi everyone,
Radiation simulation was done last Monday. Ryan had to get 5 tattoos. OUCH!! He was none too happy, but
again, they have to be very precise when they do the radiation treatment and these tattoos are
necessary. Ryan joked that he's probably the only 11 year old in Groveland with multiple tattoos. The
other "funny in a sad way" thing was that he has so many other tattoos from previous radiation that
they had to use a different color to distinguish them. So he now has blue and green. *sigh* We were
then hoping to be able to sneak home for a few days before the treatments start but a phone call on
Tuesday ruined that. The radiation people wanted another MRI done. They had done a CT for the
simulation and were planning on overlaying it with the MRI that was done post surgery. BUT, that MRI is
now a month old and they felt.....again, for that precision accuracy........that a fresh MRI was
needed. So we hung around till Friday for that and THEN headed home for a few days of FAMILY LIFE. All
4 of us home at the same time!!! All 4 of us eating home cooked meals at our own kitchen table. All 4
of us sleeping in our own beds. No need to say good-night by phone. Ahhhhh. Never EVER take any of
those things for granted people (finger wagging)!!! And just to make our home experience complete, Ryan
spiked a fever Saturday night so we spent the entire night in the ER at Boston Children's getting IV
antibiotics and platelets. Odd how comforting it is to be in your home ER. Or maybe it just illustrated
how much Sloan's Urgent Care sucks. Even our trip to the Jimmy Fund Clinic today was almost fun. He got
to see both of his primary nurses that have been with him since Day One.
The home time is short-lived though as we head back to NY this Wednesday. Radiation set-up is Thursday
and treatments start on Monday the 25th. And it damn well better start then. It SHOULD mean that
radiation will be finished on the 29th so Ryan SHOULD be home for Halloween for the first time since
2006!! Any more delays and they're going to see the really ugly side of a stressed-out psycho cancer
mom. They've had a glimpse, but they ain't seen nuthin' yet. The radiation is supposed to be done
concurrently with another round of chemo (irinotecan/temedar again). Hoping this doesn't slam his
counts too hard. What comes after all that?? Probably back to VT. More driving. Oh, and as if on cue,
my car's "check engine" light came on the other day......on my new engine. Ha-ha-ha-ha-ha-ha-ha. Isn't
that funny?? I'm laughing so hard I'm crying. No, wait. Just crying. By the way, how do you know if
you're having a nervous breakdown? Does it come on slowly, or just one big WAMMO and suddenly you're
sitting in a corner rocking back and forth sucking your thumb?? Just wondering........no reason.
So please pray that Ryan's radiation/chemo goes smoothly so I don't have to do my Linda Blair
impersonation. I'm dating myself. Ten points for anyone who gets the movie reference.
Thank-you for all your continued prayers for Ryan and please keep all our NB Warriors and Angel families
in your prayers as well.
Love and "100% hope",
Norma and Paul
OCTOBER 8, 2010
Hi all,
Greetings from the Big Apple.....still. It took a whole week from the time the radiation people told us
what they were going to do till they finally scheduled the simulation. FRUSTRATING. His simulation will
be this coming Monday. I'm told the planning that follows before the actual treatments can start takes
1 to 1 1/2 weeks. FRUSTRATING. But, in all fairness, this image-guided radiation does take a lot of
meticulous planning for precise "sub-millimeter" accuracy. No margin for error. So, if all goes okay
with the simulation and if Ryan is otherwise doing fine, and if his counts cooperate, we may try to
sneak home for a few days next week before the radiation begins. If, if, if.
We had a Changing of the Guard last weekend. Paul and Matthew came up to NY and I drove home with
Matthew for a few days. I needed to repack. We had left in August so the summer wardrobe Ryan and I had
with us wasn't cutting it anymore. It was also a good thing because Paul and Ryan got to spend some
much needed time together for a change as did Matthew and I. Ryan enjoyed having "man time" with his
Dad and Matthew enjoyed having some home cooking. The only disappointing part was that Matthew and Ryan
only got about 24 hours together last weekend. They miss each other a lot and Ryan is just plain
homesick. Today I put Matthew on the school bus and then drove to NY and we switched back.
Ryan has been feeling much better over the last couple of days. No pain issues. The pain patch is still
there but he hasn't had any breakthrough pain which is really good. Maybe the chemo actually did
something! Overall this past week Ryan's post-chemo counts have been doing reasonably well. He got red
blood the other day. His hemoglobin was borderline but he seems to have more energy since he got
transfused. The new transfusion threshold for platelets is 20 and he maintained in the upper 20's all
week. Not that upper 20's is good, but at least it's encouraging that they did not just continue to
drop, drop, drop. He got platelets today just to be sure he was covered for the weekend. ANC was also
borderline today so he got a GCSF shot. First one since last Sunday which is pretty good.
Octoberphobia: Fear of what hellish crap the month of October will bring us.
We've started to "affectionately" call October "Hell Month". Three years running.... 2007, 2008,
2009....October brought Ryan 2 consecutive relapses and last year's near-death pneumonia drama. We dread
this month. It feels like the car just stalled on the train tracks and there's a freight train barreling
towards us. Damn! Everyone's seatbelts are jammed too. Can't........get.........away........
We're usually okay the first half of the month. It's the second half that brings us more terror than any
Halloween slasher movie possibly could. I want to go to sleep now and wake up in December. That's about
the time we're usually picking ourselves up and dusting ourselves off......and coming home to find the
pumpkins still on the front steps underneath the avalanche of fallen leaves. The scenario is getting
old. So everyone, get praying that Ryan makes it through October unscathed and that we won't have to
struggle this year to find things to be thankful for on Thanksgiving Day.....and that we're HOME
Thanksgiving Day!!! Come to think of it, that we're home for Halloween, which Ryan has missed these
past 3 years as well. He hasn't trick or treated in our neighborhood with his brother and friend Duncan
since 2006. We always used to go out together every year since they were tots. *sigh* Have I mentioned
lately that CANCER SUCKS???
Please pray for all our Warriors and Angel families. Especially
Nick Franca who has now far exceeded Ryan
in the "can't catch a break" department by miles (I know.....hard to believe). Also, Evan Lindberg, a sweet little boy with
wonderful parents. Pray the remainder of his journey is peaceful.
Once again, thank-you to everyone who voted in the Pepsi Refresh contest and mobilized friends and
family to do the same. We finished in 2nd place.....good enough for $250,000 which will go toward
developing the Turbo 3f8!!!
Love and "100% hope",
Norma and Paul
SEPTEMBER 30, 2010
Hi everyone,
So we heard back from the radiation oncologist who presented Ryan at today's tumor board meeting. Some
good news for a change. Many, many eyes examining his MRI concluded that the tumor is not as close to
the spine as they first thought. After a surgery, there are "post surgical changes" that are sometimes
hard to distinguish from tumor tissue. However, they are pretty confident that the tumor, though close,
is far enough away that they will not have to do that surgical procedure I mentioned in the last
update. They will however still have to do a more sophisticated form of radiation called "image guided"
radiation. They will do a CT scan and A LOT of planning to be as precise as they can....no margin for
error. Ryan will get a big megablast every other day for 3 treatments instead of the usual 10 or so
days. Once they get the insurance approval they will start the planning and schedule his simulation.
Planning will take about a week and a half but it appears we'll be able to get the actual treatment
done much sooner than we thought before.
Chemo is going well. No nausea or problems at all. Today they put a fentanyl patch back on for pain. He
will stay on the dilaudid till tomorrow so as to give the patch a chance to enter his system fully.
Tomorrow I meet with Dr. Modak to discuss adding a 3rd agent. He has a copy of the personalized medicine
list that was done for Ryan in VT so he may pick something from that. I e-mailed Dr. Sholler the other
day for her input but have not heard back.
Envy and Guilt:
In the last 6 1/2 years we have met dozens of families battling NB. Here in NY there is easily the
highest concentration of NB patients in the world. You meet, connect, commiserate, network, hand-hold,
celebrate, comfort, encourage and, all too often, say good-bye forever. Today was another 'good-bye'
day. Have you ever looked into the eyes of a parent and friend who's just been sent home, their last
shred of hope ripped away by a single scan and the words "there's nothing more we can do"? Heart
wrenching doesn't even come close. The only thing worse is being behind those eyes. Besides heartache,
what I am feeling now is guilt. Not survivor guilt so much as "misplaced envy" guilt. This is a family
I was once envious of because Ryan had had more relapses and more disease at the time than their child.
Not that I would wish more disease on any child, EVER, but sometimes in moments of despair, you can't
help but say "why couldn't that be Ryan with only one spot". Now they're the ones going home and we're
still here fighting, our hope still afloat. Many times over the years I've had the "why couldn't that
be Ryan" feeling, only to watch that child with only one spot suddenly progress wildly and die. When
you're in our shoes, it's often hard to find the ability to be grateful, especially as the setbacks
pile up. For whatever reason, Ryan's disease, though significant, is letting us fight on. And I will be
grateful. Even as we put another pain patch on him along with the oral dilaudid, even as we watch his
counts drop for all the wrong reasons, even as we prepare to radiate his spinal tumor again. As I
watched that family leave the clinic for the last time, so filled with sadness for them, the guilt hit
me again. And the realization "There but for the grace of God go I".
Please keep Ryan and all Warriors and Angel families in your prayers. And a BIG, BIG thank-you to
everyone who has been voting in the Pepsi contest. Last time I checked a little while ago, we were
still in 2nd place!! Love and "100% hope",
Norma and Paul
Hi,
This is the last day of voting for the Pepsi contest. And the last time I will hound you about it! We
are currently in 2nd place and need to hang on until midnight tonight so please keep voting and asking
your friends to vote. Remember to use ALL your e-mail addresses. You can vote 3 ways... 1) Refresh Everything.
2) Facebook
resource. 3) Text 102653 to the number 73774 Below is from another NB mom's recent update. I'm
borrowing it (hope you don't mind Trish) because it PERFECTLY illustrates why we need less toxic
treatments like the Turbo 3f8 this money will help fund. Even a seasoned veteran like me cried when I
read it.
"At the risk of being redundant - I am reposting the side effects Kate will have to manage for the rest
of her life from her toxic cancer treatments.
The first decision we had to make for her on the day she was diagnosed was to sacrifice her future
fertility. We have lost 1 and a half adrenal glands, at least half of her hearing, her thyroid, much of
one kidney; her liver pancreas and heart have toxic iron overload, subjected her to high risk of
secondary cancers like leukemias and brain tumors from radiation and chemo. We have scar tissue in her
liver from VOD - a rather nasty and nearly fatal stem cell c?o?m?p?l?i?c?a?t?i?o?n?, We have sacrificed
her ability to grow... to produce growth hormone. (We can't give it to her artificially because it
might stimulate her cancer cells to grow too.) Her coordination and reflexes will never fully come back
from the V?i?n?c?r?i?s?i?t?i?n?e?. Her ability to manage her blood sugar and possibly even body
temperature are on the table. We have damaged her pituitary and hypothalamus with radiation. Here's the
thing: this is only a partial list.
If we win the contest the money will go to Dr. Cheung to develop turbo 3f8.
Here's the list of toxicities from turbo 3f8 None.
Final impassioned plea - please vote three ways today and tomorrow. If there is anyone you haven't
tapped who you think might be willing to vote - please ask them today.
In honor of September being Childhood Cancer Awareness Month."
SEPTEMBER 28, 2010
"Look at a stone cutter hammering away at his rock, perhaps a hundred times without as much as a
crack showing in it. Yet at the hundred-and-first blow it will split in two, and I know it was not the
last blow that did it, but all that had gone before." ~Jacob A. Riis
“Patience is waiting. Not passively waiting. That is laziness. But to keep going when the going is
hard and slow - that is patience.” - Author Unknown
Two quotes I came across the other day that "spoke to me". Nearly 7 years of hammering......and the
going is indeed hard and slow. And patience is wearing thin.
Ryan was discharged from the hospital on Sunday. He's doing pretty well. The pain is still there but
being managed with the higher dose oral dilaudid every 4 hours. I sometimes have to give him an extra
milligram if he has breakthrough pain, but that has only happened 2 or 3 times.
We spent the better part of the day in clinic on Monday trying to get a plan hammered out and in motion.
As per usual, no one in the clinic (save for Dr. Modak) knew much about what had happened inpatient.
"Left Hand, meet the Right Hand. Now shake". *sigh* So I spent a lot of time bringing people up to
speed. The easy part was getting the chemo lined up. Today he started Irinotecan and Temedar, 2 agents
he's had several times in the past but they felt it was as good a combo as any, and a good "sensitizer"
for the radiation we'd been talking about. Ahhhh, the radiation. Silly me for thinking that would be
easy. But this is Ryan, so nothing is easy.
We finally had our consult with Dr. Wolden (head peds radiation oncologist) this morning. Looking at
Ryan's MRI she says there's still remaining tumor very close to the spine. Close enough that if it were
not radiated too, any radiation would sort of be pointless as this unradiated bit would keep growing in
the worst possible spot. She feels that conventional external beam radiation is not an option since it
could not safely get close enough without damaging the spinal cord, He's already had the max amount to
the spine. The good news is that Slaon has a team of uber radiation spine guys specializing in difficult
spinal radiation cases. 10 docs she describe as the best in the world doing "cutting edge" type
procedures to address tricky cases like Ryan's. They have their own tumor board meeting on Thursdays
and she will present Ryan at this week's meeting. One of the possible options she described is to do a
surgical procedure that may remove a bit more tumor but the main focus is to put a piece of foil in
place to protect the spinal cord so that they can get MUCH closer and safely radiate. The bad news is
that all this takes A LOT more planning and scheduling than conventional radiation. The actual
treatment, if it includes the surgical procedure, most likely would not happen for close to a month or
so. She should be able to give me their recommendation no later than Friday. On the downside, it's
always scary to delay any treatment. The pain isn't going to get better on it's own and I fear it will
get worse. BUT, it appears we're in the best place with the best docs to address this whole thing. But
nothing can happen fast enough - ever.
So back to the clinic I went with this news. I asked Dr. Modak if the Irino/temedar combo is still the
right choice given this gap in the radiation start date. He said yes but maybe we would add a 3rd agent.
He mentioned one I'd never heard of and the name escapes me. I e-mailed Dr. Sholler to ask of possibly
one of the agents on Ryan's personalized med list would be a good/better choice. Waiting to hear back.
This chemo will finish on Friday. Depending what we hear from Dr. Wolden, we MAY get to go home for a
bit before they need us back. Although that might present a problem if he gets a neutropenic fever at
home and we're stuck inpatient in Boston when they want us in NY for planning. But we miss home, Dad
and Matthew, our friends, eating home-cooked meals all together, OUR LIFE. Ryan's missed the first
month of school. CANCER SUCKS!!!!
And just to add more stress.......Ryan has not been scanned in several weeks and not had systemic
treatment in several weeks. We have no clear picture of what the rest of his disease is doing for sure,
but it's a pretty safe bet that there has been more progression. We just have to hope and pray that it
is minimal and the Hydra has not grown more heads. The biggest worry is his bone marrow disease. His
counts continue to drop and as I said in the last update, this is likely due to major marrow disease.
This chemo combo is not anticipated to have a big impact on this. It's a catch 22. We can't hit him so
hard that he can't recover counts, yet his counts can't recover anyway unless we reduce the bone marrow
disease. To do something high dose at this time would, as we've seen in the past, make him sick as a
dog, he'd be inpatient for weeks, and leave him unable to continue treatment for a lengthy time. And
he's never gotten a particularly good response to HD chemo anyway.
THIS IS WHY WE NEED LESS TOXIC TREATMENTS THAT ARE EFFECTIVE!!!!!!!!!!! We've clawed our way back to 2nd
place tonight in the Pepsi Refresh contest. Two more days to vote . This will indeed be a photo finish.
It looks like Pepsi is not going to disqualify the Progressive Slate group, so please don't forget to
vote using all your e-mail addresses, texting 102653 to 73774 and downloading the FB app. Get your
text-happy tweens and teens on it too.
Many friends in need of prayers - as usual - but especially our buddy
Jack Demers . Jack is having a big surgery on
Friday.
Nick Franca who is suffering with yet
another agonizing complication from toxic treatment.
Evan Lindberg, who is waiting to see if
radiation has cleared enough spinal disease so that they can proceed with intrathecal treatment. And so
many more.
Please keep Ryan in your prayers. We are very, very, very, very worried and scared wondering what this
monster is doing inside of him. But we will keep hammering away at the rock until it gives. Love and
"100% hope", Norma and Paul
SEPTEMBER 22, 2010
Hi all,
Below are excerpts from e-mails I've received from other BoP members including NB mom and Arms Wide Open
founder regarding some unethical manipulation of the Pepsi Refresh project by the group now in 3rd
place. Please read AND KEEP VOTING to fend this off and report to Pepsi. These groups need to be
disqualified! At the bottom is a way for you to complain to Pepsi.
"Apparently a number of progressive groups have turned this into an opportunity to push their
political agenda and are trying to get their "projects" to win over a million dollars in the month of
September. This is a disgusting attempt to take away funds from desperately needed medical research
that could save countless lives. Here
is their website:
One comment they made could disqualify them - someone from their group wrote on our pepsi comment
section and other walls ".....help us win top 10 spots in $5k, $50k and top 2 in
$250k and take $1 million from the big business and give it to the little guy", something to that
effect. NB mom and Arms Wide Open founder reported that and we hope they all get
disqualified for it - you are not supposed to push or use your idea to support political or religious
parties, and she said just that so I really hope they get disqualified.
They formed before the contest was started to "take" the $1 million from Pepsi - hopefully that pisses
Pepsi off a little bit too.
If you would like to complain/report this to Pepsi, the Pepsi # is 1-800-768-2784 and the offending
email address is pepsirefresh(AT)young-america.com
Please spread the word about as these progressive groups should be exposed and more vital projects need
to be voted for."
Thank-you.
Norma
SEPTEMBER 22, 2010
Ryan remains inpatient. They're STILL trying to get a handle on the pain management. The other night
they started the fentynel (sp?) patch for pain. He was still hitting the PCA pump for rescues so last
night they changed it to a higher dose patch. Today he was still hitting the PCA so they decided the
patch wasn't for Ryan and they wanted to go to oral dilaudid every 4 hours. Ummm, that's what he was on
when we came in with out of control pain! So they upped the dose on that from the former 2 mg every 4
hours to 3 mg every 4 hours. That started tonight around 6:30 and so far he's been doing pretty good. I
believe he's hit the pump only once since. I think the pain now is okay when he's not doing much but if
he moves a certain way he gets a big stab. That happened a little while ago in bed when he rolled a bit
and let out a pretty good yelp. We'll see how he does overnight and early tomorrow. If this holds him,
we should get released and go back to the Ronald. Oh, and he's been running occasional low grade fevers
too. Cultures have all been negative. The fevers could just be disease related. I remember that was one
of his symptoms just before he was originally diagnosed. Ryan's counts in general have been slowly but
steadily dropping. This with no treatment very likely means it's marrow disease running rampant. Very
scary.
Hopefully on Monday we can get things rolling finally with treatment - see the radiation oncologist and
get the chemo started. Pretty sure we'll do the irinotecan/temedar. To do the study which includes those
drugs plus avastin, we'd have to wait till scans are done, run the risk of him not qualifying due to
low platelets and, even if all goes well, would not be able to start till Friday. Just too long to wait
given how long it's already been since his last chemo.
And on the Pepsi contest front, I'll borrow from Caryn Franca's update tonight.....
"After soaring to second place we now have to hold on! The group that was in 6th
place surged to 3rd today... funding small insurance for uninsured under 26... well sorry, but this is
more important!!!!!! Please, please help us drive this cause to the finish line!!! We have to HOLD on to
2nd place through the 30th. Other group are mounting their spring to the finish and we have to do the
same. If you have sent ANY mass emails, please do it again. If you have schools, churches etc. voting...
please push again this weekend. I have a feeling every day next week is going to be like watching a
horse race... We must prevail... and it is out of our control... all up to the people who remember to
vote every day.
PLEASE CONTINUE TO
VOTE SO WE DON'T LOSE GROUND NOW. AND text 102653 to 73774. EVERY DAY!!
AND vote by adding the pepsi app to your facebook page. Please, please don't let up now that we have
gotten this far!!"
Please pray the Ryan's pain is alleviated, that his treatment plan gets going ASAP and of course is
effective!
Many thanks to everyone for their support through this latest bump in the road. A special thank-you to
Auntie Mary for staying with Matthew a few times when Paul needed to come to NY. This allowed Matthew to
be home and stick to his usual routine. Thank-you, thank-you!!!
Love and "100% hope",
Norma and Paul
SEPTEMBER 22, 2010
Hi,
When you come to the end of your rope, tie a knot and hang on. ~Franklin D. Roosevelt
Once again, Ryan is being Ryan and throwing us curves.
So we're not home yet. Sunday after we had done our transfusion at Urgent Care, Ryan's pain was getting
worse and worse. By dinner time I had to have his surgeon paged. We first tried adding an extra dose of
oral dilaudid but that didn't work. He told us to head to th ER at NY Presbyterian where the surgery had
been done. He was worried there was bleeding into the surgical site or some other issue that might
require another surgery. They did a spinal MRI to check and the site looked fine. Ryan's pain was bad
enough during the MRI that they had to stop it at one point and a doctor came down and gave him an IV
push of dilaudid. He was later admitted and put back on a PCA pump for pain control. They had to up the
dose on that on Monday.
If you recall, the surgeon did not remove the whole tumor, just the portion that was inside his vertebra
and compressing the spinal cord. The majority of it is still there and it appears that it is now acting
up and causing this intense pain. Maybe we made it angry?? Since we ruled out any need for more surgery
to fix a problem with the surgical site, it was decided that we were better off at Sloan with his NB
doctors at the helm instead of the surgeon. And so we had the gazillion dollar, 2 minute ambulance ride
across the street Monday evening and that is where we remain right now. Ryan's pain is pretty well
controlled with the PCA pump. We waited an agonizingly long time for a plan to come from the team since
then. Ryan wasn't in any shape to be put in a car for several hours ride to VT so we felt strongly that
we needed to do some therapy NOW, HERE. The first recommendation was radiation to the remaining tumor.
We will probably do this along with some mid-range chemo to address the rest of his disease too which
hasn't been treated in WEEKS. The combo will likely be irinotecan and temedar and the radiation will
probably be over 10 days but they will be done concurrently. All this probably won't happen until the
beginning of next week. There's a lot of "probably's" and "likely's" in the last few sentences, but
nothing is actually etched in stone or scheduled. Dr. Modak will e-mail the radiation oncologist here
and also Dr. Sholler to get their input. Another option would be to do this all in VT, but as I said,
we're just not comfortable putting him in a car for several hours.
Tonight they started transitioning Ryan from the PCA pump to a fentynol (sp?) patch for pain control.
I've heard from other parents that this works quite well. We should be able to be released possibly as
early as tomorrow and just follow-up at clinic this week. He is still getting platelet transfusions
ever couple of days or so. Hopefully, the radiation will stop this tumor's growth and thus, his pain.
And then we can figure what our overall gameplan will be.
The good part about coming back over to Sloan is that it is familiar territory for us with lots of
familiar faces. A few of our friends are inpatient right now too. Including our new friends the Demers.
Jack and his mom are our roommates which is fabulous!! If you have to be here, you might as well pass
the time with friends.
Please pray that the treatment plan will do the trick and that Ryan will once again be comfortable
without the aid of narcotics.
Also, I believe we're now in 2nd place for the Pepsi contest.
PLEASE CONTINUE TO
VOTE SO WE DON'T LOSE GROUND NOW. AND text 102653 to 73774. EVERY DAY!! Just about a week left to
vote.
THANK-YOU!!
Love and "100% hope",
Norma and Paul
SEPTEMBER 19, 2010
Hi everyone,
We are finally back at the Ronald as of 9:30 last night. We thought we were going to be released on
Friday, but of course, Ryan's blood pressures went back up. The lasix and getting rid of the excess
fluid helped the first time earlier in the week, but there was no excess fluid anymore. By late in the
day on Friday they decided to start him on the same blood pressure medicine (enalopril) he has had in
the past. It was kind of funny because I'd been speaking with Dr. Sholler earlier and explaining about
the BP issues. She asked if they'd started the enalopril yet and I told her they hadn't. Her reply was
"Well, they'll figure it out eventually. This is Ryan being Ryan." And they did. Eventually.
After a lot of back and forth yesterday, they decided to release him as long as we could follow-up with
his other docs no later than Tuesday. This decision came at about noon. Ryan, the veteran who knows only
too well how hospitals work, said "Yeah, it probably won't be till 9:00 o'clock tonight". We left at
9:15 p.m. Not wanting to be slammed around in a NYC cab (he knows them well too) he opted to walk the 6
blocks back to the Ronald. We took it slow and he did fine. He is still having pain though and remains
on the oral dilaudid every 4 hours.
So with all the emphasis on the BP issue yesterday, everyone forgot about his platelet issue. No one had
told me what his platelets were yesterday. Turns out they were only 54. He had gotten platelets the day
before on Friday when they were 47. That's not a good bump at all. Now that we're being released on a
Saturday, I'm worried about him needing platelets before he's seen in clinic again during the week. We'd
gone to Sloan's Urgent Care on the weekends before for transfusions, but it was always pre-arranged by
the clinic. Also, we're being discharged from NY Presbyterian, not Sloan, so I asked them to verify
that I could go to Urgent Care today (Sunday) for a CBC and possible transfusion. I was worried that,
with no pre-arranged appt., Urgent Care would tell me he wasn't an emergency and send us packing. It
would seem to me to be simple phone call to check on this. It took like 2 hours to get this
confirmation, but I wasn't leaving without it. Both I and the nurses pointed out that it would have
been easier/quicker to just give him platelets before we left and he'd be good till Monday and I could
get him checked early before we left for home. Don't know why that couldn't be done. So that was the
little glitch that kept us there till 9:15.
Late in the day on Friday, Dr. Greenfield (the neurosurgeon) came by to check on him. He is pleased with
Ryan's progress. I have to say he was SO nice and we are very satisfied with him. He even talked to me
about where we were heading for follow-up treatment saying that he wanted to make sure we had a plan
either with Sloan or VT and offered his assistance if we needed it. Very nice man.
So we'll head over to Urgent Care shortly. After that, we'll pack up the room and get ready to head HOME
tomorrow (thanks Uncle Bob for the ride). Paul is, as I type, heading to VT to retrieve my car with it's
new (used) engine. In a weird way it kind of worked out that we were in NY so long because if we were
home I wouldn't have had a car to take Ryan to Boston or VT. Dr. Sholler is trying to arrange scans for
later in the week, so our hometime will be short-lived. Ryan has not had treatment now for several
weeks so we really need to get on it ASAP. No rest for the weary as they say.
Thank-you for all your prayers for Ryan. Please keep praying.....we're worried what scans will show
since he's had no treatment for so long.
Please pray for our friend Kate Madigan,
who is in the PICU right now. Like Ryan, she has a way of confounding the doctors with unique and
bizarre complications. Also, our friend Jack
Bartosz who has relapsed once again. And so many more are struggling right now. It never ends.
PLEASE continue to vote EVERY DAY AND text
102653 to (pepsi) 73774 . We're in 4th place and there is less than two weeks left to vote. Ryan and so
many of his friends need new treatments FAST. Money stands in the way.
Thank-you.
Love and "100% hope",
Norma and Paul
P.S. Congrats to Matthew and his band who had an awesome performance Friday night. They performed 6
songs. Ryan and I missed it of course, but from what we hear, they were GREAT!
SEPTEMBER 16, 2010
Hi,
It wouldn't be Ryan if we didn't have some drama.
First of all the good news. Ryan was released from ICU early yesterday evening. He is now on the regular
peds floor.
The bad news. Just before we were transferred, his oxygen saturation numbers were down in the 80's (100
is perfect). Sometimes this is due to a finicky sensor that is taped to his finger, so they tried
another one - same thing. Transferred him anyway. They were getting the same numbers in our new home
too. Tried another sensor, then tried another machine, same thing so they had to admit these low oxygen
numbers were real. They gave him a "blow by" which is a tube that we hold in front of his face that
blows oxygen at him. This helped, but if it was moved too far away, the numbers dropped again. At this
point I'm having a PTSD flashback to last Fall and his pneumonia/ICU horror show. The resident was
pretty good and stayed on top of things and ordered a chest x-ray. A common thing that happens
post-surgery is that fluid can build up in the lungs from laying down too much and not breathing deeply
enough due to pain. The x-ray was "inconclusive" but did seem to show stuff that could be this post-op
fluid build up. Ryan was in so much pain he wasn't getting out of bed much since the surgery or taking
big deep breaths to keep his lungs opened up. They started him on some breathing exercises in addition
to the oxygen support. We switched to a nasal canula overnight since keeping the blow by in position is
hard.
AND, never satisfied to have just one problem at a time, at this point Ryan's blood pressures started
rising, getting up to as high as 148/110. Here we go again with the blood pressure! They theorized that
he may be getting too much IV fluid so they stopped that. No change. Now they added in lasix which is a
diuretic so he can "pee off" excess fluid which should help both his lungs and his BP issue. Slowly,
the BP started to come down and as of about noon or so today, it was back to normal.
He was able to get up and walk for the first time early this morning. He'd gotten up before but this was
his first walking. He also moved his bowels for the first time, which is very good. We had to remove the
nasal canula for this walk and when we got him back to bed and hooked back up to the monitor, his
oxygen was back down to 86. However, again by noontime or so, he was much better, lungs sounded clearer
and they removed the oxygen to see how he did without it. He has been able to maintain his oxygen
levels really well without support. He's been up and walking some more too. Whew!!!
We REALLY wanted to get through this with no complications or set backs.....but this is Ryan......what
were we thinking??
Keep praying and keep voting. I hear we're in 3rd place! Vote on line EVERY DAY
atThis link: AND text
102653 to (pepsi) 73774 EVERY DAY.
Love and "100% hope",
Norma and Ryan
SEPTEMBER 14, 2010
Hi,
Ryan FINALLY had his surgery this morning. The surgeon said all went well and it took roughly 2 hours.
He got out all of the tumor that was inside the vertebra and compressing the spinal cord. He "peeled it
away" from the spinal cord (yuck). He said the cord was pushed waaaay over and barely visible when he
first went in as the tumor was now wrapping itself around the cord. After the tumor was out, the cord
quickly "bounced back" into place and looked perfectly normal....he even showed us a picture of the
area which was taken after the tumor was removed. He was able to get a bit more of what is outside the
vertebra, but not too much from the angle/approach they were using, so we still need to deal with that.
He said it was obviously active disease (no kidding).
Ryan is now in the ICU and doing well. He was awake and alert when we got in to see him. He's obviously
on pain medication which is alleviating most of the pain, so he's comfortable for the most part.
They're now hooking him up to a PCA pump which allows him to give himself a blast of dilaudid when he
needs it. Ryan has started drinking and hopefully will be allowed to eat soon. He's in pretty good
spirits too.
Of course things couldn't possibly go smoothly this morning.......why start now?? Yesterday I was told
that the nurses in the surgical floor could access his port. After we were there for about 1 1/2 hours,
we were told that they do not access ports at all. They were hunting around for someone to do it,
calling doctors to see if they would access it. I kept telling them that doctors virtually never access
ports, nurses do it. After 3 different docs came in to say they couldn't do it, they finally called the
peds floor and had a peds nurse come down. *sigh* Why can't they ever listen to parents?? I even
offered at one point to run him across the street to Sloan to get him accessed. I was told that they
can't even use a line that was placed elsewhere, so that wouldn't help. UGH! More stress, but in the
end it all worked out.
We are SO relieved this is finally DONE!!
Thank-you for all the prayers!!!
Love and "100% hope",
Norma and Paul
SEPTEMBER 13, 2010
Hi everyone,
Up and down, back and forth, on and off, we're in, we're out. It's been a fun couple of weeks indeed.
Things were looking pretty good last week for a Tuesday (tomorrow) surgery. He got platelets on Friday
at clinic and they instructed us go to Urgent Care again on Sunday for some more if they were under
100, just to pump him up. We had a good time with Paul and Matthew on Saturday, but they had to leave
on Sunday and Ryan and I had to go to Urgent Care for his CBC check and likely platelet transfusion,
which he did end up needing. The nurse was just about to start the transfusion so she did the usual set
of vital signs first. What'dya know. A fever!!!!! Great! I made the poor nurse retake it 3 times. First
one was oral. "But he just had hot chocolate, that's why it's up." Okay, ear thermometer.....even
higher. "But he was sleeping on that side, that's why it's up". Okay, other ear. Yup, it's a fever
alright. *sigh* They gave him a 24-hour dose of IV antibiotic after the platelets finished. He slept
for quite a while and when I woke him to leave, we took the temp one more time. It was the highest yet
at over 103 degrees orally (no hot chocolate and with Tylenol on board). After the less-than-impressive
Fellow with the 2-inch metal rod piercing through his ear merely shrugged and said "I dunno", we left
armed with instructions to take Tylenol and follow-up on Monday morning at the clinic. The fever
persisted ALL night between 100 and 101 with the Tylenol doing nothing to lower it. Finally it broke at
5 a.m.
So in clinic today I'm bracing for them to tell me that the fever means no surgery tomorrow. However,
our Nurse Practitioner says we're still on. Okay!! As she's going over the events of the weekend, she
mentions the temp and asks how high it went. When I told her, her eyes bugged out and she said "that's
not what my e-mail says". Apparently the report she got from Urgent Care only mentioned the original
fever of just over 100.5, not the 103+. Now this new info prompts a call to the neurosurgery team to
get their thoughts. A while later as Ryan is getting his platelet transfusion I'm summoned back to see
the NP who tells me that neurosurgery thinks they should wait till Thursday now to see if anything
grows out of the blood cultures that were drawn in Urgent Care.....just to be on the safe side.
G-r-r-r-r-r-r!!! Post-poned AGAIN. Deeeep breathes. I called Paul and told him not to come after all.
And we all mentally re-adjusted ourselves for Thursday. Ryan of course takes the news the best and just
says "okay".
A few hours later, back at the Ronald, my cell phone rings. It's the same Nurse Practitioner and now she
says that neurosurgery reconsidered and we're BACK ON for tomorrow. HUH?? Seriously?? We don't need to
be on the safe side anymore?? Whatever. Okay, so now I'm scrambling to get paperwork done and Paul now
has to race down here tonight after re-re-re-arranging Matthew coverage (thank-you Auntie Mary). I
swear I'm not going to believe it's a "go" until they wheel Ryan into the OR. He is scheduled as the
2nd case and should go in somewhere between 10 and 11 a.m. BTW, the procedure is called a laminectomy
where they remove a piece of the vertebral bone (lamina) to get at the tumor. He'll go to ICU
afterwards but should only be in for 2-3 days. It's not being done at Sloan but across the street at NY
Presbyterian, whose ICU we're painfully familiar with.
Needless to say, pray, pray, pray that all goes well, that they get as much of that sucker out as
possible and that Ryan has a quick recovery. We desperately need to get him back on some sort of
therapy for the rest of his disease. The surgical delays have us VERY worried that we've lost ground
with his overall disease burden.
We will update as soon as we can after surgery.
Love and "100% hope",
Norma and Paul
P.S. Have you voted today??
Pepsi has a 'Refresh Everything' campaign and the charity with the most votes receives a $250,000 grant.
A Band of Parents member has entered her foundation ‘Arms Wide Open’ with the idea to FUND LESS TOXIC
THERAPIES FOR CHILDREN WITH CANCER. If it wins $$ will go directly Sloan Kettering for the development
of the 'Turbo... 3F8', which Ryan would be eligible for. Below is the direct link to their site AND you
can text 102653 to 73774 (pepsi). Just take 30 seconds to register with a password and vote. You can
vote every day AND you can vote both via the website AND text for 2 votes a day. Last I heard, we were
in 10th place! You can vote very day until the end of September. This is the link:
SEPTEMBER 10, 2010
Hi everyone,
Just a quickie while I have Wi Fi (very unreliable at the Ronald).
Paul and I met with the new surgeon, Dr. Greenfield, yesterday. We liked him and are feeling better
about the switch. He even said he had an opening as early as Tuesday so long as Ryan's counts
cooperate. His ANC is climbing back up but one of the side effects of the GCSF shots is that it
suppresses platelets......so those are back down to 66 yesterday. We will go to clinic today for a
transfusion and another CBC to see where we're at. May have to do it again at Urgent Care over the
weekend too. Hopefully we can stop the GCSF shots today.
Paul went home yesterday after the meeting but he and Matthew are coming back tonight so we can spend
the weekend together. Ryan and I haven't seen Matthew since the end of August!! He's probably another 2
inches taller!!! LOL!
Ryan is doing okay, Pain comes and goes but hasn't been too bad. He made a new friend here which is
nice. Usually there aren't too many boys his age. Jack is another Green Day fan and they've really hit
it off. BTW, please keep Jack in your
prayers as he and his family have been upended by his 3rd relapse . His mom Fran is wonderful and
hosted a movie night in their room last night. It's kind of bittersweet to watch these two warriors
dealing with their treatments but still being kids together with their iPods and Nerf guns. We watch
them with both a smile and a tear....
As always, thank you for your prayers for Ryan and all our Warriors and Angel families.
Love and "100% hope",
Norma and Paul
P.S. Don't forget to vote on line EVERY DAY
At THIS SITE AND
text 102653 to (pepsi) 73774 EVERY DAY to fund less toxic treatments for our kids!!!! Spread the
word!!! We're in 7th place!
Have you made anyone AWARE yet that it is Childhood Cancer Awareness Month??? Are you wearing your
GOLD???
SEPTEMBER 8, 2010
Hi everyone,
Man, what a roller coaster the last week has been. Ryan was not hanging onto platelets despite many
transfusions. As late as Tuesday, they were still only 57 before his transfusion and we're thinking it's
not going to happen. BUT, his post transfusion CBC shot up to 123!!! We were thrilled thinking THIS IS
IT, WE'RE IN!. Then we looked at his white cell count and ANC, which now indicated that he was
neutropenic (unable to fight infection). So he was given a GCSF shot yesterday to boost the white
count. Today's CBC showed that he was indeed hanging onto those platelets (112), but the ANC was only
up to 800. They want him over 1,000, preferably without the aid of the GCSF shot. So now the big
question was whether or not they would do the surgery with this low white count. After lots of
discussion amongst the surgeon and the NB team, it was finally decided that the risk of infection was
too great to go ahead with surgery tomorrow. They want to reschedule to NEXT Thursday. ARRRRGGHH!!!
As if that wasn't bad enough, the cherry on top was the news that our esteemed (and much
trusted) neurosurgeon would be out for at least 2 weeks. His wife is having a baby due next week (the
nerve!!). But his partner would be available to do the surgery. NOOOOOOOOOOOOOO. We've never even heard
of this guy and I promptly had a meltdown right there in the playroom at the clinic. The poor NP who
had to deliver the news was very nice and I'm guessing went into the back and told the team that "Mrs.
Reardon is coming unhinged" because about 3 minutes later she comes and tells me Dr. Cheung (NB team
leader/guru) wanted to see me. He very patiently sat down with me and explained the very real risk of
serious infection, which you never want anywhere but especially not in the spine. He gave us the option
of postponing for a whole month if we really wanted to wait for Dr. Souweidane to return and do another
round of chemo in the meantime. That option isn't appealing for 2 reasons. One, his tumor progressed
through the last chemo so it's not likely to behave now. Waiting could allow the tumor to do more
damage. Two, we'd likely be back where we were last week waiting for counts to recover again and
end up with more delays. So, we're 99% sure we'll do the surgery next week with the other surgeon. Paul
is driving up and we will meet with both surgeons tomorrow. From what I'm gradually starting to hear
from others, this other guy is quite good as well. I guess you don't get hired to be a neurosurgeon at
Sloan Kettering if you're not top notch. But we could really do with a few less curve balls. So could
Ryan who was none too happy either. He wants this done and over with. I reminded him he has carte
blanche on swearing at cancer, so he let loose (just a bit). So, our blood pressures are
starting to come down, slightly. No longer hyperventilating. Trying to believe that everything happens
for a reason. Just not a clear one necessarily.
As usual, please pray that the planets align next week.....and that the other surgeon has no babies on
the way, out of state weddings or bar mitzvahs to attend, vacation plans, or whatever.
Please also pray for our friend Nick Franca
who is having some serious complications. And the many, many other warriors battling the monster.
And lastly,
Pepsi has a 'Refresh Everything' campaign and the charity with the most votes receives a $250,000 grant.
A Band of Parents member has entered her foundation ‘Arms Wide Open’ with the idea to FUND LESS TOXIC
THERAPIES FOR CHILDREN WITH CANCER. If it wins $$ will go directly Sloan Kettering for the development
of the 'Turbo... 3F8', which Ryan would be eligible for. Below is the direct link to their site AND you
can text 102653 to 73774 (pepsi). Just take 30 seconds to register with a password and vote. You can
vote every day AND you can vote both via the website AND text for 2 votes a day. Last I heard, we were
in 10th place! You can vote very day until the end of September. This is the link:
Love and "100% hope",
Norma and Paul
SEPTEMBER 1, 2010
Hi everyone,
STAND DOWN: to withdraw from a state of alert or readiness
And so, we "stand down". Ryan's surgery has been post-poned until Thursday of next week. His platelets
came in at a very low count of 9 yesterday. They need to be 100 for surgery. One transfusion yesterday
bumped him up to 42. This morning he'd already lost some and was down to 37. Another bag of platelets
got him up to only 57. He also got a bag of red blood since his hemoglobin was borderline as well. We
weren't sure all day if we were going to just keep going with transfusions today and again early
tomorrow to pump him up for surgery or cancel. They'll even keep giving platelets during the surgery
too. Finally Dr. Souweidane came by about 4:30 and after some discussion decided it was too dangerous.
Excessive bleeding in the area during surgery could paralyze him. WE DON'T WANT THAT!!!!
So it seems the vincristine he got last Thursday, which wasn't supposed to hit his counts, DID. It takes
a lot of psychological prep for each of us to gear up for a big surgery like this and to have it
cancelled at the last minute is frustrating to say the least. But of course we want to err on the side
of caution.
Since Ryan is obviously going to still need transfusions over the next few days, and since Boston won't
do transfusions over a weekend unless he's actually bleeding (and this is a long weekend), we will stay
in NY where he can get transfused. So that takes us to Monday and we need to be here early on
Wednesday, so it looks like we'll just stay right through. Paul, who drove up today.....for
nothing.....will go home tomorrow and come back next Wednesday again.
Today marks the beginning of Childhood Cancer Awareness Month. While most kids are
starting school, Ryan and SO many others are starting/enduring treatment instead. This is an excerpt
from www.goldthenewpink.org website: EVERY September is Childhood Cancer Awareness Month, and like most
people, you probably didn't know that. Did you notice the HUGE Pink Ribbon hanging in front of the
White House during the Month of October? We did. Did you notice the Pink bats the Major League Baseball
players used in their game's? We did. Did you notice the Pink wrist bands on their wrist's, as well as
the Pink Towels used to wipe their sweat? We did. Did you notice the Pink footballs used by the
National Football League, as well as the Pink ribbon on their helmet's, shoes, uniform, and goal
post's? We did. Did you notice EVERY TV news channel mention breast cancer awareness month EVERY DAY in
October? We certainly did, and We are not alone when We say, it is a damn shame that not one single
word has been written, or broadcast by the above mentioned entities regarding Our Children of Cancer,
the terrible disease's they fight, their Parent's struggles, or the most important fact.....Cancer
Kills Children too....
WEAR THE GOLD and help raise awareness. Make the GOLD ribbon as recognizable as the pink ribbon. Here
are a couple of sites to for some gold ribbon products. Gold Ribbon Products and OTHER GOLD RIBBON PRODUCTS and there are more if you
Google "childhood cancer awareness". Please pray that Ryan's counts
recover quickly and he can have his surgery next week....and that his symptoms don't worsen before
then.
Thank-you!!!
Love and "100% hope",
Norma and Paul
AUGUST 29, 2010
Ryan and I are heading to NYC tomorrow (Monday). Paul will come down on Wednesday. Ryan's surgery is on
Thursday morning, first case. Please, please pray for a successful, complication-free surgery and a
speedy recovery. Ryan has been having more pain from this tumor in the last several days. Please also
pray that this does not get any worse before surgery.
If he is nervous about the surgery, he doesn't show it. He's SO brave!
Heaven gained a new angel today. Please pray for Aisylin Bledsoe's family
. Aisylin was in the POU (step down unit)
at Sloan Kettering last October/November when Ryan was also there battling his pneumonia. More than once
her parents were told the end was near. She fought mightily and defied the odds for these many months.
Please keep all our NB warriors and Angel families in your prayers. It has been a devastating
month in the NB world.
Love and "100% hope",
Norma and Paul
AUGUST 27, 2010
Hi everyone,
We are back from VT. Scans were this morning and the results are a mixed bag of the good, the bad and
the ugly. First and foremost, there was no major disease progression as we had feared. Whew! The
good news is that some of the boney lesions are smaller/fainter. The bad news is that others are
bigger/brighter. The ugly news is that the paraspinal tumor is significantly bigger and is now REALLY
compressing his spinal cord. Dr. Sholler is amazed that Ryan has no arm/leg weakness and that he passed
his neuro exam with flying colors. She decided to cancel the bone marrows today. We know his marrow has
significant disease and we really don't need to test again just to confirm that. There's certainly no
chance that they're clear, so why bother. She is VERY concerned about that paraspinal tumor. We told her
we were heading to NY on Monday even though his surgery isn't until Thursday. She was very happy that
we would already be there just in case things got dramatically worse before Thursday and they needed to
move up the surgery. Let's hope not!! The dramatic rise in his VMA, which we thought was an omen of a
big progression, she sais is probably mostly due to the paraspinal tumor growing. Dr. Sholler also said
she would talk with the radiation oncologist about radiating the remainder of the tumor after surgery,
avoiding the actual spine which we can't hit again. Also maybe zapping his legs again which have several
spots.
She she was not comfortable with Ryan going without chemo between now and the surgery, so he got a dose
of vincristine, which he hasn't had in a while. Supposedly it will not hit his counts - though we've
heard that before. He also got another dose of Zometa, the bone strengthening drug he got in July when
he had the arm fracture. Since he has a lot of boney disease, this will hopefully strengthen the bones
enough to avoid more fractures. He will stay on the oral Zolinza right up to surgery.
What chemo we do after surgery is still up in the air. There are a few options such as looking at the
personalized med list again and see if there's another combo that looks good. We also decided to revisit
the possibility of doing Nifurtimox. We had said we would never do that because it had some nasty side
effects (seizures and dramatic weight loss are among the biggies). They seem to have worked out the
seizure thing pretty well and we already have him on an appetite stimulant. Anyway, it's on the table
for more discussion. If all goes well with the surgery, we will be back in VT on 9/9 to hash it out.
Radiation to the surgical area would obviously have to wait for proper wound healing.
So, though it's certainly not ideal, we are actually relieved at the scan results for the most part. We
REALLY thought we were going to get hit with horrible news today. It could have been so much worse.
We've be so incredibly stressed and anxious in the last week. Apparently, God thought I needed something
to take my mind off of scans. So my car broke down on I89 on the way up to VT on Wednesday, in dramatic
fashion. I need a new engine. Ka-ching!!! Something broke off in the the engine and tore thru it and my
oil pan. Huge cloud of smoke....I thought the car was on fire. Coasted over to the breakdown lane and
yelled at Ryan to get out of the car. A lot of smoke, but no fire thankfully. So yeah, didn't dwell on
scans for quite some time........just focused on trying to get to the hospital before the clinic and
nuke med closed for the day as Ryan needed to be accessed and get his MIBG injection. At first the
state trooper was going to drive us up a couple of exits to a rent-a-car place, but instead had to
leave for an armed robbery up the road. Yeah, I guess that's more important. But the really nice tow
truck driver guy towed my car to the garage, then drove us to the hospital in his pick-up (about an
hour drive one way). Thankfully, he wasn't an ax murderer, just a really nice tow truck driver guy.
Paul obviously was coming up to VT anyway for the scans, but came a little earlier, dealt with the
mechanic, got our stuff out of my car and then joined us at the Ronald.
We soon got back to stressing about scans again. But it was nice to have a little variety. We are home,
but my car is in Northfield, VT awaiting a new (used) engine. And just for the record, every inch of I89
is in fact "the middle of nowhere".
Note to self: Add Really Nice Tow Truck Drive Guy to my Christmas card list. And get AAA.
Needless to say, Ryan needs LOTS and LOTS of prayers that the surgery is successful and
complication-free. And that we come up with a new and improved treatment plan post-surgery.
That's about it.
As always, thank-you for all your prayers for Ryan, all our NB warriors and Angel families.
Love and "100% hope",
Norma and Paul
AUGUST 23, 2010
"Ryan is doing pretty well. He told me a few days ago that his back has not hurt in a long time.
We're hoping that is a sign the new chemos are working!! "
That was the opening lines of the last update. Well, I
spoke too soon. Since then, the pain has returned. Not in the actual tumor area, but along his ribs.
Nerve pain caused by the tumor messing with the nerves around it. He's been needing dilaudid for a few
days now. The other day we learned that his VMA (tumor marker) was up AGAIN to an even more frightening
110. I remember freaking out last summer when it went up to the 20's (single digits is ideal). We head
to VT on Wednesday and he will have his MIBG scan Thursday morning and bone marrows in the afternoon.
Nervous doesn't even begin to describe how we're feeling right now. Scared to death is closer, but
still not quite there.
We did hear from the neurosurgeon on NY. Ryan's surgery is scheduled for 9/2. This is both good and bad.
Good because, given the pain he's having, the tumor is obviously growing and we want to get it the *#$%
out of there before we're in real trouble symptomatically. Bad because it means we won't get the 2nd
opinion from the Boston surgeon that we wanted. His first available appt. is 9/3. The other bad thing is
that 9/1 is the first day of school, which Ryan obviously will miss. He's EXTREMELY upset about this.
He's had the same teacher and (for the most part) the same classmates through 4th and 5th grade, but now
he'll have 4 new teachers and new homeroom classmates, new routine and schedule, etc. He's really
nervous about coming in late to all this. Matthew starts 7th grade at a new school, and we won't be
here to see him off. Have I mentioned lately that CANCER SUCKS!!!!!!!!!!!
We were at Jimmy Fund Clinic Monday, Wednesday and Friday of this past week. He needed platelets all 3
days. Per the protocol he's on and due to the paraspinal tumor, they want to keep Ryan's platelets above
50. He never got above 50 all week even AFTER the transfusions, only getting about a 20 point bump each
time. Could be for various reasons, none good. It could be that his bone marrow is so packed with
disease it can't make platelets, although he's only needed one red blood transfusion so he's hanging on
to those pretty well. Could be that because he's gotten SO many platelet transfusions over the years
that he's become "refractory". Platelets can become less effective when your immune system recognizes
the donated platelets as different from your own. Your body then produces antibodies (proteins produced
by the body to fight a foreign substance). The antibodies attack and destroy the platelets quickly.
This occurs most often in people who have had many blood and platelet transfusion.........like Ryan.
There is testing that can be done to more closely match donated platelets to Ryan IF this is indeed the
problem. We're back here again today for more platelets. And I'll also take this opportunity to remind
everyone that the need for blood and platelet donors is CONSTANT. Donate at Boston Children's between
now and 8/31 and be entered to win 2 tickets to the Red Sox/Yankees game on Oct. 3rd. More info @ . Donate
any other time and just feel good about yourself!
Please pray for our boy. He's been pushing this boulder uphill for over 6 1/2 years now. The hill keeps
getting steeper and his little body is getting weaker. So much bad news in the NB world lately. Many
struggling with treatment, many being sent home on hospice. Others relapsing.
A few of our friends in need of prayers right now.
Nick Franca ;
Evan Lindberg; Ethan Smith;
Ryan Regan; Christopher
Mullen;
Aisylin Bledsoe who is nearing the end of her
journey ; Sal Vanni is finally home
to continue recovering after a very scary couple of weeks in ICU,
Please pray for all our Angel families as well. It's all I can do to restrain myself when I'm in stores
right now overhearing parents either griping about what they have to spend on school clothes and
supplies OR going on about how thrilled they are at the prospect of getting rid of their kids every day
now that school is starting. This may sound harsh, but if you can't appreciate your healthy children,
then maybe you don't deserve them. Sit down and talk to a parent who has one less child to buy school
clothes for and put on the bus this year. I know several I can put you in touch with.
Yup, this update was a downer. Nope, no positive note to end on.
Love and "100% hope",
Norma and Paul
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