Ongoing updates of the entire story: This page is appended as new material arrives : check back
often!
NOVEMBER 20, 2009
Hi everyone,
Wednesday they did a renal scan to do one last test on Ryan's kidneys. The results were normal. His kidneys have
been checked up, down and all around and are perfectly fine. Which is good news, but still leaves us with no
explanation for the high blood pressure. On Tuesday they upped the dosage on the long-acting blood pressure
medicine and he has not had any BP spikes since Wednesday, so that's good.
Tuesday night he was vomiting more than he had in days. So on Wednesday they FINALLY replaced the NG tube with a
slightly larger one and it is working better. It wasn't pleasant having it replaced, but he is a trooper. Since
then the vomiting has all but stopped although his nausea is still there from time to time but seems to be
lessening each day.
He has been up and walking more and is working a little with the physical therapist to keep him moving and be
sure he doesn't weaken physically.
Today's "test du jour" was an upper GI. Fortunately, he didn't have to drink the white chalky gunk. They put it
thru his NG tube. It was a LONG process because it did make him nauseous so they had to put it through very,
very, very slowly. It took a full 2 hours for the stuff to move from his stomach to his intestines. Once in the
intestines, it moved along quite well. So the problem is more the stomach not working than the intestines. There
was no blockage or narrowing or any physical problem noted. Now the plan is to slowly introduce clear fluids
into his stomach in hopes that something resembling food will stimulate the stomach into action, like it should
normally. This will be done initially through the NG and should start today.
The NB team wants to be completely sure that none of the blood pressure/vomiting issues is due to a CNS relapse.
Even though the head CT was normal, they want a brain MRI and have also moved his MIBG scan up from the 2nd week
in December to this Tuesday. Additionally, they are going to tap his Ommaya port (the port in his head they used
to treat his brain relapse) to get a cerebral/spinal fluid sample to test. Monday he will also have a chest CT
just as part of the normal post-NK cell treatment work-up. All that would be left would be bone marrow biopsies
and I haven't heard anything about those being scheduled yet.
Soooo, where does all this leave us with regard to Thanksgiving?? Good question. He IS feeling better but these
issues are far from resolved. And he has tests scheduled right up to Tuesday of next week. Plus I believe that
the IV nutrition he's been on has to be tapered rather than stopped abruptly - not sure on that though. Paul and
Matthew will come down on Tuesday either to spend the rest of the week with us here, or (hopefully) take us
HOME. Dare I dream?? We still have 5 days to turn things around. It can be done.
Okay, the last two paragraphs give you your assignments. START PRAYING.
Thank-you for all your prayers for Ryan and all our NB warriors. Please say some extra prayers of strength and
comfort for our angel families who are facing the holiday season with a broken heart.
Love and "100% hope",
Norma and Paul
NOVEMBER 17, 2009
Hi everyone,
You know you've been here a really long time when the guy at the Starbucks counter in the lobby feels sorry for
you and treats you to a free cup of coffee. And when he goes out of his way to stock the fat free strawberry
banana yogurt you like. *sigh*
So, intestines are still sleeping. He's still nauseated a lot of the time. Whatever stuff they've given him to
stimulate the intestines have so far failed. NG is still not functioning the way it should. And everyone is
thoroughly sick of hearing me complain about it. Today they agreed to pull it and put in a slightly larger one
since this one keeps getting clogged up. Even Ryan agreed to that. In frustration I suggested just stopping
EVERYTHING except the blood pressure meds and just see what his body does. They weren't too keen on that idea
saying that some of the newer meds they're trying take several days to do their thing and we should give them
more time. So we ARE stopping the IV anti-nausea stuff that makes him sleepy since it also prevents him from
doing the walking that should help stimulate his gut into action. The Attending is going to go back over the
records of when the sleepy gut thing started since I reminded her it pre-dates the intubation/sedation thing
which is what they have been attributing this problem to. They're consulting with the surgical team here at
Sloan since this intestinal issue is fairly common after surgery and perhaps they would have some bright ideas.
At least one of those meds that take a few days to act was on their suggestion. They also tried consulting with
the gastro-intestinal folks across the street at NY Presbyterian (Sloan doesn't have any peds GI people), but
since they do not have privileges at Sloan, they can't come over and check things first hand, so that was a
dead end.
Blood pressure is still high. Waiting on some urine tests that may shed some light on that issue. He's on two BP
meds. One long-acting that he gets twice a day and another for "rescues" when his BP spikes up anyway, which it
does at least once a day. They're also consulting with the nephrology (kidney) people here since kidney issues
can cause BP problems - although his kidneys appeared fine on the CT and seem to be working properly. They're
the ones that ordered some of those urine tests I think, so they're waiting to see what those reveal.
Naturally, those take several days to come back. AND they're talking to radiology to see if there are any other
scans/tests they can do on the kidneys as well. I asked that since so far the kidneys appear to be just fine,
and if they are deemed to be just fine, what do you look at next as a high BP culprit. They said in adults
usually it's cardiac, but not so much in kids. But, they decided to schedule a cardiac echo just to take a
look. Anyway, bottom line.......still waiting for a light bulb above someone's head to flicker on.
Paul and Matthew came up over the weekend and, as usual, that helped lift Ryan's spirits. And Ryan got an extra
big surprise on Saturday when his cousin Andrew from California walked into his room! Ryan just froze, wide-eyed
and jaw hanging open. It was all too short a visit but they went for a walk around the floor, stopping in the
playroom for a couple of rousing games of Go Fish with Matthew and Paul. It SO cheered him up. Thank-you
Andrew.....you made his day!
S-s-s-s-cans are scheduled for the 2nd week in December. That's 2 weeks later than they should be so I'm going
to try and see if they can get moved up a bit.
BTW, there was a mix-up on the address to send mail to Ryan. There is no room 921B at the Ronald (that was his
inpatient room number before he went to the PICU). So, to send him something at the Ronald, address it: Ryan
Reardon, c/o Ronald McDonald House, 405 E. 73rd Street, Room 1101, NY, NY 10021.
PLEEEASE pray that they get all these issues resolved soon so we can be home for Thanksgiving!!!
Love and "100% hope",
Norma and Paul
NOVEMBER 13, 2009
Hi all,
Happy Friday The 13th.
So the CT showed nothing, no obstruction or anything of interest save for the possibility of a small kidney
stone in his ureter. Great. One more thing. However, that has nothing to do with anything else going on.
The NG tube went in late yesterday afternoon. We were expecting the usual (almost) immediate relief of the
nausea and vomiting but it only relieved it slightly. It was suctioning some, but not nearly as much as it had
the past two times he had one in. Since he was still nauseous and puking, I questioned if the tube was placed
correctly. Usually they do an x-ray after to confirm placement, but we did the CT instead and no one said
anything looked wrong with the tube. He continued to have a miserable night, puking ALL night and I kept asking
for someone to check on the NG tube placement. All I was told was that it was suctioning so it must be fine. I
knew it wasn't suctioning enough though. Are you guessing yet where this is going. The resident (not the
overnight one) came in early in the morning to check on him and I told her what a miserable time he'd had all
night. She said that perhaps the NG tube wasn't positioned correctly and may be up against the wall of the
stomach thereby preventing optimal suction. She said it may need to be pulled out just a bit to reposition it.
Really??? You don't say. So that's what they did and guess what?? THAT was the problem!! But hey, what do I
know? I don't have MD after my name. G-r-r-r-r-r-r-r-r-r!!!!!!!!!!!!!!! A whole night of misery could have been
prevented by a 10 second adjustment. So now my new battle is getting them to realize that it once again is not
working correctly. There's a point where the tube can be disconnected and capped so he can get up and walk
around. At that connection, it seems to be getting clogged up and the suction stops. And the nausea returns.
Twice they've given in to my pestering and flushed it and got it working again. But it doesn't last too long.
It's like it's a defective tube or something. *sigh*
Obviously, the sleepy gut is still snoozing away. Tonight they are adding a new med to try and wake it up. And
then there's the blood pressure thing too which was actually worse today. The new record high this evening was
154/114 and is NOT good. They give him medication for it and it comes down, but then goes back up again. No idea
what's causing it but they're doing a urine collection to look for something-or-other that might be
responsible. I'm thinkin' his body is just pissed off. I think we all are. I wonder what they'd get if they
took MY blood pressure right now.
So if you weren't counting (and why would you be) we are now on Day 25 inpatient. That's out of 26 days since we
got the brief 24 hour reprieve back in October. Our new inpatient record - by a mile. Never in our worst
nightmares could we have foreseen all the complications that have occurred. If he doesn't get a HUGE response at
scan time, someone better take away my belt and shoelaces.
Not surprisingly, Ryan's spirits are in the pooper still. All I can say is that we'd better be home for
Thanksgiving or he'll be so crushed. Though the scans aren't actually scheduled as yet, they technically should
fall in Thanksgiving week. When I told Dr. Modak we wanted to be home for Thanksgiving, all he would say about
that was "we'll do the best we can". Great. That's reassuring.
Well, it's that time again......
Please pray (a lot) that these intestinal and blood pressure issues resolve soon and that we can get released.
And it's not too soon to start praying (a lot) about those upcoming scans too.
Love and "100% hope",
Norma and Paul
NOVEMBER 12, 2009
Hi everyone,
Ryan is still inpatient. And things are not improving. In fact, yesterday and today are significantly worse with
more puking and less pooping than Monday and Tuesday. They did abdominal x-rays again yesterday which show no
obstruction (in the surgical sense). His intestines just appear to be asleep and are not moving normal body
secretions along and it's all just sitting there. No one can explain why exactly. We know the large amounts of
sedatives he got while intubated can put the gut to sleep, but this problem pre-dates the intubation/sedation.
He is nauseated all the time now. Constant IV anti-nausea meds are not working either. These meds make him
pretty sleepy so it's hard to get him up and walking which is something they want him to do as that helps get
his insides moving too. This kid has not eaten anything since October 18th. Small sips of clear liquids are all
he gets and that gets puked up. He has lost 5-6 pounds. Fortunately, he was on the beefier side before we
started all this so it doesn't really show on him.
And now add to the mystery high blood pressure too. High enough that they are going to give him medication to
bring it down. They do not have an explanation for this either. The most obvious causes they have pretty much
ruled out. Of course the medication is oral so now we'll see if he can keep it down long enough.
So the doctors just came by. They want to now do a abdominal CT to get a better picture of what's going on down
there. It will also give them a picture of his kidneys which could potentially be the cause of the high blood
pressure, though they appear to be functioning normally. The docs also want to put the NG tube back in to drain
his stomach and relieve the vomiting. His platelets are low so he'll get platelets first before they put the NG
in. They also want to keep the platelets up because of the high blood pressure. No idea when the CT will happen
since it's an add-on to their schedule.
He is pretty miserable again, misses us being all together and wants to go home.
WHY CAN'T THIS KID CATCH A BREAK??????????????????????????????????????????
Please pray the this CT gives us some answers and a course of action. Please pray for all our NB warriors and
angel families.
Love and "100% hope",
Norma and Paul
NOVEMBER 9, 2009
Hi all,
Saturday Ryan was moved out of the POU and is now back on the regular floor. It's a double room but we've been
lucky in not having a roommate yet! His lungs are doing well and he's been up and about more. He's been in
better spirits too. A visit over the weekend from Matthew and Uncle Michael helped....although too short. He and
Matthew enjoyed exploring the new iTouch together, playing cards and watching TV. Today we've been playing
cards and continuing a spirited game of Monopoly that we started yesterday.
Ryan's plumbing issue has not resolved yet. Over the last few days, he had been getting a couple of different
laxatives thru his NG tube, sometimes throwing them back up. >From time to time they had been turning off the
suction on the NG to see how he would do. Yesterday he was disconnected from it and we were in the playroom for
a while. When he got up to leave he inadvertently stepped on the end that was hanging down and pulled the NG
tube right out!! OOPS!! We both just stood there staring at it in disbelief. Fortunately, they were planning on
leaving it clamped for the day to see if any vomiting would come back. He could not have anything to drink at
all to see how he tolerated normal body excretions first. If he did not vomit at all, they would let him try
sips of clear liquids today. He did fine all day yesterday and overnight. This morning though he did vomit. The
team came around a little while ago. I'm glad they did not suggest re-inserting the NG tube AGAIN. He was soooo
happy to be rid of that thing as well as all the extra IVs. All he has right now is one line from his port.
Yesterday they eliminated one antibiotic and the antifungal and today they are discontinuing the rest of the
antibiotics. He's still getting anti-nausea stuff and of course the laxatives.
As for blood counts, today he is up to an impressive WBC of 1.2. He got platelets early on Saturday but hasn't
needed them since (24 today). Hemoglobin is 8.2 so he may need blood today or tomorrow. Usually it's just counts
we're waiting for to get released, especially since he has had no fevers in days. Overall they are happy with
his progress, but we still need to resolve the bowel issue and make sure he's able to eat. He's still on the TPN
(IV nutrition).
It's hard to believe that one week ago yesterday, he was intubated and shipped over to the PICU. Wow, what
difference a week makes. We were so, so terrified that he wouldn't recover and certainly never thought he'd turn
around so fast. From the bottom of our hearts we want to thank the legions of prayer warriors who stormed the
heavens on Ryan's behalf. He (and we) are so blessed to have so many in his corner.
Due to all the heavy sedation, Ryan doesn't remember any of his PICU stay. Didn't know he'd had a breathing tube
or that he had been writing while he couldn't talk. I told him how he amazed everyone with that. We kept hearing
words like "remarkable", "incredible", "unbelievable" from the nurses and doctors as they smiled and shook
their heads in disbelief. We're so accustomed to The Amazing Super Ryan, and though we don't ever want to be in
that situation again, it is amusing to see others be blown away by him. Never, EVER underestimate this kid!
Please keep praying for Ryan and all or NB warriors.
Love and "100% hope",
Norma and Paul
NOVEMBER 6, 2009
Hi all,
Yesterday (Thursday) was a so-so day for Ryan. His lungs and breathing are doing great. He no longer has the
nasal canula and is keeping his oxygen saturation up all on his own! Thank-you God!!! Late yesterday we moved
back over to the POU at Sloan via another gazillion dollar ambulance ride across the street!
So we've dealt successfully with the pneumonia but his problem with his intestines/bowel has resurfaced.
Remember he had the NG tube put in when we first came to the POU last week? It was because he was vomiting a
lot for no apparent reason and an x-ray was "questionable" for a bowel obstruction. The pneumonia quickly took
precedence over all else and with the NG tube draining his stomach contents, it was sort of a non-issue for
several days. When the breathing tube came out on Wednesday, so did the NG. Late Wednesday night he started
vomiting again. This continued and got more severe during the day yesterday. Another abdominal x-ray shows he's
quite "backed up" - basically a walloping case of constipation. Sedation like he had during the intubation
tends to slow down the gut anyway and probably made the existing problem a bit worse - things just aren't
moving along. The challenge is how to fix it. He can't take anything orally because he'll just throw it up and
the NG tube is in anyway draining his stomach. Because of the low white count/infection risk he can't have an
enema or suppository. What they tried overnight was to turn off the suction on the NG and slowly over a few
hours give him small amounts of Miralax thru the NG. Apparently it wasn't done slowly enough and he did vomit
about 1/3 of it back up. So now they're going to give it in smaller doses, wait about 1/2 hour after each dose
to let it do it's thing, and then turn the suction back on the NG for a while so he won't get nauseous again,
and then keep repeating that process. Certainly not the biggest problem he's had, but a tricky one to fix. He's
also on IV anti-nausea meds, but they weren't helping overnight. Hopefully, the slower pace will work better.
We're also trying to get him up and moving, but he's kind of weak right now. I think they said they were going
to have PT and OT come up and help get him moving again.
The other thing yesterday was that he was just really, really sad and subdued. Extraordinary efforts to cheer
him up, including a surprise visit from the FAO Shwartz toy soldier who gave him his private tour a couple of
weeks ago didn't seem to get much of a smile out of him. Not that he doesn't have every reason to be glum, but
it's just not like him. Last night we watched an hour of America's Funniest Videos, a favorite of his, and he
barely cracked a smile. He's hardly even played with his new iPod Touch!! We're hoping we can turn that around
today.
We have a very long list of people to thank for many things. First of all our dear friend Barbara Zobian from
Candlelighters who literally flew into action when the crisis hit. She brought us enough food for two days of
meals since NY Presbyterian doesn't provide meals for parents like Sloan does. And thank-you to her friend
Marlene for the delish Mexican dinner! When Barbara heard I wanted to put up photos of Ryan in the PICU so the
docs and nurses could see the "real" Ryan, she immediately printed out a bunch she had on her computer from the
FAO Shwartz visit, and she was responsible for the toy soldier visit yesterday. Even got me a nice soft pillow
so I don't have to use the yucky vinyl hospital pillows. And about 100 other details. Thank-you so much! A huge
thank-you to Auntie Mary, Uncle Michael, Kathy and all our family and friends back home who have disrupted their
own lives to take care of Matthew and help keep things as normal for him as possible, and allowing Paul to be
here in NY through this ordeal. And my friend Sue who flew home to Albany from CA Monday night and promptly took
a train to NYC Tuesday to spend a few days with us for much needed hand-holding. As I said, it's a long list so
I'm sure I'm forgetting some people......but we appreciate EVERYONE's help. This was far and away the most
harrowing week we've ever had and all the support has been amazing. Please continue the prayers for Ryan. We
need to get this "plumbing" issue resolved soon, get his lungs completely healed, get him more comfortable and
HAPPY again. And then we'll get back to dealing with neuroblastoma (oh, that!). He should have scans some time
towards the end of November. Speaking of which, please pray for little Ylaria, the first child on this NK cell
trial. It cleared her initially, but we were devastated to learn this week that she has relapsed. This disease
is EVIL!!!!
Love and "100% hope",
Norma and Paul
NOVEMBER 4, 2009
Hi everyone,
As of 9:30 this morning, the breathing tube is OUT!!!! Ryan is now breathing with a nasal canula with minimal
oxygen support and will continue to be weaned. I can tell you it was SOOOO good to hear his sweet (though
scratchy) voice again!! How we missed that. All the sedation is still working it's way out of his system, so
he's a bit on the quiet side but coming around nicely, watching TV, etc. With all he's had to endure these last
several days, Paul promised to buy him something special and today asked what he wanted. Barely missing a beat,
he said "an iPod Touch". Off to the (gigantic) Apple store here in Manhattan went dad on the spot. Ryan is now
the proud owner of his own iPod Touch!! That perked him right up!!
He still has some gunk down there making him cough. His platelets are low and he's been needing daily platelet
transfusions. Once we get some platelets in him, they'll start doing some respiratory therapy like pounding his
back to get him to cough up the gunk (sorry to be gross). His white blood cell count dropped today back down to
0.1 after a high of 0.3 yesterday. G-r-r-r-r-r! So he is obviously still very immune suppressed and at risk of
infection. Now that he is off the respirator and breathing more and more room air, I was concerned about the
risk others posed to him and asked one of his nurses if everyone could wear a mask at the bedside. I was told
that they don't do that here (known as reverse precautions). They do it at every other hospital we've been at
so I was not happy with this. So I waited outside our room for the Attending to come back out after he finished
with another patient and expressed my concerns. He agreed with me and went back in to talk to the nurse.
Lengthy discussion ensued and continued down the hall. I assumed the nurse was putting up a fuss. A while later
the Attending came back and said that it turns out there was an isolation room available and that Ryan would be
moved there shortly. He is now in a private room with a GREAT view of the East River and the 59th St. Bridge
and everyone entering is wearing a mask, gown and gloves!! As far as we're concerned it is a reasonable
precaution given the hell he's been through this past week. I'll be damned if I'll let him be put at
unnecessary risk for an infection he still can't fight!! It's strange. They have all along been wearing the
gowns and gloves so I'm not sure why the mask was such a big deal.
Dr. Kushner stopped by to check in on Ryan. The first thing Ryan said to him was "The Yankees are going to
lose." Too funny. I think Dr. Kushner and the whole team are very relieved that Ryan is recovering so well. It
was a scary episode to be sure and it really rattled everyone.
So the plan right now is for Ryan to be moved back over to Sloan tomorrow some time. Still not sure if it's to
the POU or the regular floor. In a way we'll kinda miss this nice private room!
We want to once again thank everyone for all the voicemail messages, guestbook signings and e-mails of support
and encouragement. They REALLY help and mean a lot to us. We especially want to thank Ryan's class who have
rallied behind him. Team 33 ROCKS!
Keep praying that Ryan's lungs continue to heal and that his counts come back up soon. Thank-you!!!!
Love and "100% hope",
Norma and Paul
NOVEMBER 3, 2009
Hi everyone,
Good news. The doctors just left and said that Ryan's x-ray today once again looks better. His left lung is
opening up nicely. The right still shows some collapse in the lower lobe. When he came into ICU both lower lobes
were collapsed. Nothing has grown out of any of the cultures they've taken. His settings on the respirator are
all at the minimum levels. They feel he is ready to have the breathing tube come out. The respirator has done
it's job of letting him rest and opening up his lungs. They just want to wait one more day to give him the
little extra benefit - don't want to take it out only to have him backslide and have to put it back in again. So
the tube is scheduled to come out tomorrow morning!! He will still have some oxygen support, probably the nasal
canula again. If all goes well, he would be in the PICU another 24 hours after extubation and then be able to
go back over to Sloan. Not sure if it would be to the regular floor or the Pediatric Observation Unit. There's
only 3 beds in the POU so it may have more to do with bed availability. Oh, and the NG tube will come out as
well. No one was totally convinced that he indeed had a bowel obstruction, so I guess we'll see how he does
without the NG. If he starts vomiting again, I'm not sure what that will mean.
THANK-YOU FOR ALL THE PRAYERS FOR RYAN. He has improved even faster than we had hoped. He still has a long way
to go but the corner has been turned. His white blood cell count is still only 0.2 (0.3 yesterday) so further
infection is still a worry. I can't believe how many days have gone by without even thinking about
neuroblastoma! Who would have thought that it drop down on the priority list like that!!
Keep up the prayers!!
Love and "100% hope",
Norma and Paul
NOVEMBER 2, 2009
Hi,
Ryan had a pretty good night. He is obviously heavily sedated so he won't become agitated and fight the tube in
his throat. Overnight they were able to dial back some of the settings on the respirator. He started off needing
60% oxygen and is now down to 35%. He also started off with the machine giving him 22 breaths a minute and that
is down to 14. At times he takes a few breaths of his own, which is good. With the tube in they can suction out
some of the gunk down there. Many, many cultures have been sent off but we still don't know exactly what we're
dealing with...bacteria, virus, fungus, etc. He's being given a wide range of antibiotics, antifungal and
Tamiflu to cover all bases. The shotgun blast approach. Ideally, one of these tests will tell us more.
Unfortunately, most take a few days to get back. Today's x-ray looked a little bit better. The respirator is
opening things up some.
You're braver than you believe, and stronger than you seem, and smarter than you think. - Christopher Robin to
Pooh. Now for a "Ryan Moment". Last night at one point the sedation had worn off just a bit and he was opening
his eyes and moving his hands. He indicated with his hand that he wanted to write. His nurse was amazed saying
she'd never had a sedated intubated patient that wanted to write before. So she got him some paper and hard
binder to write on. His first attempt wasn't legible. But then he wrote very plainly "New" and then "YoK", then
rewrote "York" realizing he'd left out the "r". I said yes, you're in New York, you're in the hospital. Then he
took the pen and made a swinging baseball bat motion. I said "the baseball game? You want to know about the
baseball game?" He nodded. The patient next to us had the World Series game on and he must have heard it. I got
the score and told him and he nodded again. Can you imagine??????? Chock one up for The Amazing Super Ryan!!
A couple of times today he's opened his eyes in response to someone talking to him. Moves around a bit and
fortunately seems comfortable with the tube and doesn't try to grab at it. If he did then they would up the
sedation, which we don't want them to have to do. We like seeing glimpses of our Ry-guy. When asked if he has
any pain or discomfort he shakes his head "no". He now has an arterial line in one hand and a peripheral IV in
the other, so I don't know how much more writing he'll be able to do. He did the above before they put those
lines in.
Yesterday was the NY City Marathon which is a big deal at Sloan. Many of the clinic staff we know came to the
hospital for it. They take patients that are well enough down to the street to watch some of the runners go by.
Last year Ryan was inpatient and we brought him down. One of his 3f8 nurses stopped by the POU to check in on
him (before they decided to put the breathing tube in). Today Dr. Modak came by the PICU to check on him. They
are all pretty upset about all of this. Of course they wouldn't want to see this happen to any of their
patients, but as I've always said, I think they all have a soft spot for Ryan.
As I said in the last update, we are not allowed to have our cell phones on in the room, nor do we have good
computer access. I try to go out of the unit to check for voicemail when I can. Updates will come as we are
able. Thank-you for all the e-mails and messages of support.
Please continue to pray for Ryan. Even though there was some small improvement today, he is nowhere near out of
the woods. It's just the first time in several days that he hasn't gotten WORSE. It is very, very traumatic for
us to see him like this. To not be able to hear his voice or interact with him much is so, so hard. But we know
our Amazing Super Ryan will bounce back again.
Love and "100%" hope,
Norma and Paul
NOVEMBER 1, 2009 4 PM
Very quick update. The Attending has decided to go ahead and put in a breathing tube now. After it is in, Ryan
will be moved across the street to the PICU. It's a difficult decision because he is maintaining reasonably good
numbers with the help he's getting. The problem is that he is still needing a lot of oxygen (65-75%) and if you
remove the nasal canula, his numbers drop rapidly. The thing is, if we wait until more of an emergency
situation, then it's more risky because the procedure itself takes some time and his oxygen saturations would
drop too low before they could safely complete the procedure. Better to do it now when he's better able to hold
some numbers for a bit.
Not sure what sort of computer access we'll have. Last time we were there after his brain surgery, cell phone
use was difficult too. We'll update as we are able.
Please, please, please pray for Ryan.
Love and "100% hope",
Norma and Paul
OCTOBER 31, 2009 8PM
Hi all,
Ryan is worse today. After a very restless night with little sleep, he had a bad morning where they were having
difficulty keeping his oxygen saturation up. At one point he was back on 100% oxygen through his mask. His daily
chest x-ray showed his pneumonia is a lot worse than yesterday. They decided he needed to go on the BiPap
machine which is that horrible mask strapped to his head the forces oxygen in at a higher pressure. Even with
ativan to calm him, he could not tolerate it for more than 15 minutes. So they have another type of nasal canula
that does the same thing but is much easier to tolerate. Why they didn't use that one at first is beyond me,
especially after they said it actually works better than the mask. This seems to be giving him some relief with
struggling to breathe. He's calmer and resting better. They were worried about him tiring himself out so much
that he would just get too exhausted to breathe, in which case they would have to put in a breathing tube. So
we're trying this to see if we can avoid that. I think he's being given 65% oxygen now and maintaining his
saturations in the mid 90's. From time to time they will try to turn it down more to see if he can maintain his
levels with less help.
His counts today showed his white cell count is 0.1. There's a blip on the radar at least. Of course he could be
right back down to 0.0 again tomorrow too. They've doubled his GCSF shot dose (colony stimulating factor that
helps his white count recover).
He's miserable but he's a troop too being very cooperative with the respiratory therapy procedures to help him
cough up the gunk in his lungs. Once again, he has amazed his nurses and doctors.
The NG tube is still draining stuff, which means the plumbing is still backing up. I have no idea why he would
have an obstruction. It can occur when you've had abdominal surgery and scar tissue forms. The closest surgery
to his abdomen was his adrenalectomy when they removed his original tumor back on '04. The adrenal is above the
kidney. I'm no anatomy and physiology expert but I don't see where that could impact his intestines. A CT would
show them better what we're dealing with but since he had a chest CT yesterday, he can't have another one for a
certain period of time......something about the IV contrast. The surgeon did take a look at it and wasn't overly
concerned, pointing to the chest x-ray and saying take care of THAT first. As long as the NG tube is draining
and he has no other symptoms, we can just let that go for now.
Please continue to pray for Ryan. His condition is extremely precarious.
Love and (still) "100% hope",
Norma and Paul
OCTOBER 31, 2009
Hello again,
The one thing we live in fear of every time we do high dose chemo is a serious infection while his counts are
low. We've dodged that bullet for almost six years but now but our luck has finally run out. Per a chest CT he
just had about an hour ago, Ryan has a "multi-focal pneumonia". In other words, a bunch of areas of both lungs
involved. That's the bad news. And it is very,very, very bad news. This is the type of thing we've seen other
kids die from. The do not know if it is viral or bacterial. The do know from the CT that it is not fungal. He
has been on 3 different antibiotics for several days now and they are adding another one. They done blood work
and nasal swabs which can potentially tell them exactly what we're dealing with and then hopefully exactly what
drug he needs to combat it. In the meantime they're throwing a broad spectrum of drugs to cover all bases for
now. Some of these test take a few days to come back. The other problem is that he is still vomiting from time
to time. He's too far out from chemo to have that be the reason. SO, they just did an x-ray of his abdomen to
rule out an obstruction. JUST what he'd need at this point, right? Aside from the unexplained vomiting, he does
not present with other typical obstruction symptoms so we're hoping this x-ray is negative. Ryan's sodium levels
are too low which they're trying to get a handle on and regulate. It has something to do with his fluid intake
and output. If they can't do it here, he'll need to go across the street to the PICU.
Now for the good news. His lung function has actually improved a bit since its rapid decline this morning.
Before we came over to the POU, he was getting nebulizers every 2 hours, was on 70% oxygen and was coughing
like crazy. Here at the POU they thought he'd need to be on a BiPAP machine which has a mask that is strapped
to his head in two places to hold it tight to his face. Air is forced in at higher pressure in little bursts.
They attempted it and he HATED it to the point of tears. If they were going to use it, he'd also have to have
an NG tube down his nose because since he'd been vomiting and this mask can't come off quickly enough, there
was a risk of him aspirating if he vomited with it on. Luckily the attending said to try and see if he could
hold his numbers up on just 50% oxygen. If so, he didn't need the BiPAP. He did!! Great! His coughing has
mostly stopped, he's now on only 35% oxygen and is holding his oxygen levels fine. Oh, and no more nebulizers
either unless he starts wheezing.
Ryan is in a very, very, very precarious state and we really can't overstate how serious this is. The number on
the holy shit scale went up a couple notches. But, Dr. Modak feels we can get thru this, but of course a turn
for the worse can happen any time. Remember, Ryan has NO white blood cells (and probably won't for at least
another week) to fight infection himself. If he can get thru the weekend without getting worse, that would be a
good sign. We may get to a point where we need to give him his last stem cell rescue, but Dr. Modak wants to
wait on that since it can cause it's own lung issues. It would be used if he became septic for instance.
So, needless to say, we need everyone on their knees. This is probably one of the worst if not THE worst crisis
Ryan has faced in this almost 6-year battle.
I don't know what else to say. Just please pray for our boy.
Love and "100% hope",
Norma and Paul
OCTOBER 30, 2009
Hi all,
Ryan's breathing has gotten worse over the morning. He's gone from the nasal canula at a certain oxygen rate to
increasing the rate, to changing to a certain type of mask, to increasing the rate on that, to changing to
another type of mask and so far he is now maintaining an oxygen saturation in the high 90's which is good. They
think he has some fluid in his lungs so have started him on a diuretic to hopefully eliminate some of that
fluid. They're going to try and get a chest CT today too. And since he's needed constant nursing attention,
he's being moved to the Pediatric Observation Unit (POU) where they have one on one nursing. His current nurse
today had to have her other patients reassigned so she could stay at his bedside to constantly monitor him. Dr.
Modak came by and, of course, Ryan will not get his 3f8 treatment today. Possibly Monday if he makes a good
turn around. MANY doctors have been by MANY times keeping a close eye on things. I asked the attending on the
floor where we were on a scale of 1 to 10 on the holy shit scale. He said about a 6. They are also starting him
on an antifungal in addition to the antibiotics he's on just be on the safe side.
So Ryan really needs everyone to ramp up those prayers. This is pretty scary to be sure. Paul is home right now
but is coming down today.
Love and "100% hope"
Norma and Paul
OCTOBER 29, 2009
Hi everyone,
Ryan' treatments Tuesday and Wednesday went fine. Today was another story. A common 3f8 side effect is hives and
swelling which Ryan used to get all the time. His lips and cheeks puffed up with mouth hives and even his arms
and legs swelled a bit. They treat it with benedryl and visteral. A short while after his treatment finished and
the 3f8 nurses went back over to the clinic (and we thought everything was okay), he started coughing
incessantly and his oxygen saturation numbers would drop if we took away the oxygen blow by tube and weren't
that great even with it. He had already gotten a nebulizer treatment before the 3f8 started and another during
it. So the attending came in and listened to his lungs and said he wasn't moving air well enough so he got yet
another albuterol nebulizer followed by a zopenex (sp?) nebulizer. Still his oxygen sat numbers would drop if
we removed the blow by. They did another nubulizer with a mask this time. The 3f8 team came back over to help.
Frankly I've now lost track of how many breathing treatments he's had. It's now 8 p.m., about 5 hours after his
3f8 treatment and he is still on oxygen with a nasal canula. If they take it away, he drops way down again. He
got up to go to the bathroom so it had to come off, and when he got back to bed and they attached the monitor
again, it read 74%!!! He also was vomiting from time to time and felt pretty "crappy" in his words. He is still
having coughing fits. So he will continue with the breathing treatments every 2 hours overnight. They are
basically treating him like an asthmatic. Hopefully, this will resolve overnight.
In other news..... his white blood cell count is still 0.0, he got a red blood transfusion today and his
platelets were at 23.
As usual, LOTS of prayers needed.
Love and "100% hope",
Norma and Paul
OCTOBER 26, 2009
10-27 Update:
Hi everyone,
Happy to report that Ryan's 3f8 treatment went MUUUUUCH better today. No drama. He handled the pain well with
only 1/2 a dilaudid rescue. He is still having some residual pain in his feet again which we're trying to
control with small amounts of pain medicine and hot packs.
He had a good night last night and slept well. Woke up today with just a bit of that foot pain. He asked me why
he had woken up yesterday with an oxygen mask on and "about a million people in the room". He didn't remember
any of it. He knows that all the meds make him "loopy" as we call it. I just told him he got extra extra loopy
yesterday and the monitor said he needed more oxygen. And that all the people were just making sure he was okay.
He seemed fine with that explanation. No need to go into great detail, so I'll ask that when people write,
talk or see him please don't mention how intense it really was. I don't want to scare him.
Love and "100% hope",
Norma and Paul
OCTOBER 26, 2009
10-26 8:30 PM Update:
I don't even know where to begin. This was the most frightening day of my life....EVER. In my earlier update
today I asked for prayers that the 3f8 would go well, or at least not horrible. Horrible doesn't even begin to
describe what happened. First of all, Ryan is now doing okay which is the most important thing. However his 3f8
treatment this afternoon could not have gone worse. After only 1/3 of the 3f8 infusion he started complaining of
pain, which is normal and expected. As with the other 19 rounds of 3f8 he's had in the past, they administered a
dose of dilaudid. Actually a 1/2 dose since he hasn't done this treatment in a year, so they thought it best to
start him off slowly with the narcotics. A minute or two later he vomited and then quickly became completely
unresponsive. Stopped breathing, blood pressure not registering. Within a minute there was a crash cart and an
avalanche of doctors and nurses working on him. Two doses of narcan were administered to reverse the effects of
the narcotics, he was being bagged, mouth and nasal suctioning to prevent aspiration as he was still bringing up
stuff. They're trying everything to stimulate him and wake him up, shaking him, pounding his back, digging
their knuckle into his sternum, etc. It took a LONG time. Of course it would seem like an eternity to any
parent, but I actually can gauge it against a similar incident he had last year with 3f8. This was much worse
and after far less narcotics.
So what does this mean for the rest of the week's treatments? They will go ahead with it tomorrow but will not
administer any pre-meds like they usually do (except for Benedryl). The 3f8 will be infused more slowly. They'll
watch to see how he does with the pain and will use pain meds very sparingly if at all. If something like this
is going to happen, it is usually on the first day. So we can be reasonably hopeful that tomorrow will be much
better. Nowhere to go but up as they say.
Our poor roommates on the other side of the curtain are listening to all this drama of course. I'm sure it
scared the crap out of them.....their baby is only two months into treatment for leukemia so they're just
coming out of the "deer in headlights" phase and now this. At one point the mom came out, asked me if I was
Catholic and when I said yes, she said "here take these" and shoved her rosary beads into my hand.
Ryan is resting comfortably now except for some minor residual pain in his feet. He's now breathing without any
oxygen assistance. His vital signs are good. He did spike another temp after the "episode" so they've added a
3rd antibiotic.
Obviously, Ryan needs lots of prayers for a good day tomorrow with NO drama.
Love and "100% hope",
Norma and Paul
Hi everyone,
Ryan was released from the hospital Saturday afternoon. I was mistaken when I thought he had to stay for the
weekend after the NK cell infusion. They just needed to monitor him for several hours. He hadn't had a fever in
over 24 hours, and even though his ANC is now a big fat ZERO, they decided he could be discharged. They topped
him off with some platelets and we headed back to the Ronald. He still had the hives/rash thing going on. His
whole torso, arms and upper legs are complete covered and red. Hydrocortisone cream has been helping with the
itching. The docs think it was from all the IV antibiotics he was on. But he's been off them since Friday and
it's just starting to go away.
So we got a whole whopping 29 hours of freedom before he spiked another fever Sunday night. We headed to Urgent
Care at 9 p.m. Oh.....my......God......what a fiasco! They stuck him 3 times trying to access his mediport
without success. Okay so it's a little tilted now but the clinic nurses get him the first time every time. So
then they tried to put in a peripheral IV in his hand and stuck him twice more and failed. All the while with
him screaming in pain and both of us crying - I think I blurted out something like "in nearly six years of
treatment nothing like this has ever happened.....what the f---? That's when the inept nurse left never to be
seen again. It was AWFUL. I had asked earlier if there was an IV nurse who could try and was just told how these
nurses here are great and they do this all the time. Well, after these FIVE sticks the doc comes in and said
that they called the IV team (oh, what a great idea) and someone was coming down to try. He got it right away.
G-R-R-R-R-R-R-R-R-R!!!!!!!!!! All this is over a span of 4 hours. Ryan was so traumatized saying it was the
worst day of his life. Keep in mind this is a kid who's been through years of treatment, 3 major surgeries,
nasty chemo, etc., etc., etc. and THIS was his worst day. 4 stinkin' hours to get this line in!!! Then another 2
hours for two IV antibiotics to go in before they brought us up to the floor at 3:20 a.m.!!! Even though they
got the IV in his hand, it is still necessary to access his port, not only to use it for infusions but they also
need to draw blood from it for cultures to be sure he doesn't have a line infection. This morning one of the
clinic nurses kindly came over and accessed him NO PROBLEM.
Ironically, we're back in the same inpatient room as before only with a different roommate. A baby who woke up
bright and early with lots of shrieks and was promptly given all these noisy musical toys to play with. That's
okay, two hours sleep is more than enough, really, we're fine. *sigh*
Okay, I think I'm done venting. Going to my Happy Place now.
Sometime this afternoon he will start his 3f8 treatment. Now there's something to look forward to....
Please, please pray that nothing grows out of his cultures. A real infection right now would be a disaster.
Please also pray that this 3f8 treatment goes well....or at least not horrible. And most importantly that it and
the NK cells start doing their thing and wiping out this *#)$*&*@ cancer!
I think I need a nap now.
Love and "100% hope",
Norma and Paul
OCTOBER 23, 2009
NK CELLS ARE IN!!!! LET THE @SS-KICKING BEGIN!!!!!!!! DIE NB DIE, DIE NB DIE, DIE NB
DIE!!!!!!!!!!! 
OCTOBER 22, 2009
Hi everyone,
Ryan is still inpatient. Yesterday he completed the 3rd and last day of chemo. Day 1 he got all 3 chemos, day 2
he got 2 and yesterday he only got 1. Each day has seemed a bit better. He has only been vomiting a couple of
times during the day and maybe once or twice overnight. The diarrhea has lessened but is still there. Those darn
fevers keep coming and going though. Last night I was worried as it was back up to 102.5. But now today it's
back down again. He's still on the IV antibiotics. Today he developed an annoying rash/hives. Again, they don't
know exactly why but are thinking it's one of the IV antibiotics. Last night he started with a bit of a cough so
he got a chest x-ray just to be on the safe side....haven't heard results yet.
Paul and Matthew drove down late last night. They've been at the hospital all day, staying with Ryan this
morning while I went off to have my NK cell harvest bright and early at 8 a.m. It wasn't bad at all really.
Yes, they were really big needles but the nurse who put them in was very good. Blood was drawn out of one arm,
put thru a machine that extracts the NK cells they want, then the rest went back in thru my other arm. All in
all it took 4 hours. At first my veins weren't cooperating so it took a while to get things flowing. I couldn't
move my arms at all so that last hour I was VERY ready for it to be over so I could move. But I kept reminding
myself that Ryan has endured SO much more so just suck it up. Now the NK cells will be separated and treated
overnight with a medicine called Interleukin-2. In the laboratory and in animals, it was found to make NK cells
react more strongly against neuroblastoma cells. Tomorrow at 4 p.m. Ryan will be infused with these "super
ass-kicking NK cells" (another NB mom's description!). Per the protocol, he was to be admitted for the infusion
anyway and stay for a couple days after, so that keeps us here through the weekend at a minimum. His counts are
already dropping rapidly. He is getting his first red blood transfusion as I type. White count is down to 1.5
and platelets are at 40. Pretty fast drop even for Ryan. Monday he is scheduled to begin 5 days of 3f8
antibodies. That was supposed to be done outpatient, but I'm just going to assume we'll still be here.
Paul will stay with Ryan tonight and Matthew and I will head back to the Ronald. Lots of laundry to catch up
on.....and sleep.
Please keep up the prayers. We really need to hit this one out of the park. Ryan has been a bit sad from time to
time. He hates being in the hospital of course. Hopefully as he's feeling better and better we can do more fun
things in the playroom. Many thanks to all who have signed Ryan's guestbook. He hasn't felt up to reading too
many, but I think today he will. He does enjoy them.
Love and "100% hope",
Norma and Paul
OCTOBER 19, 2009
Late News: 5 PM:
Update 5:00 p.m.
Ryan has spiked a fever. 103.8. He's on 3 IV antibiotics and will be admitted. They drew blood cultures from
his port and from a peripheral line. This is NOT good.....please say some extra prayers that it turns out to
be nothing serious.
Norma
Former Update of the day:
“Most of the important things in the world have been accomplished by people who have kept on trying when there
seemed to be no hope at all.” - Dale Carnegie
Today's the day. The day we start the process to try one more thing. We keep on trying not only for Ryan, but
for all the NB kids out there who can possibly benefit from this NK cell therapy. Just as in VT with the
TPI-287 trial, Ryan is the 2nd child to try this treatment. They will learn from Ryan. They know from the first
child that it can clear a small amount of disease. They'll learn from Ryan what it's efficacy is with a lot of
disease. We're here at the clinic now. Ryan has sailed thru the morning with his usual aplomb. I've been a ball
of nerves remembering back to last October when he did high dose chemo and he got SO, SO sick. I just read over
my updates from then........bad idea. Historically, this week in October has not been a good one for Ryan. This
week in October 2007, we learned of his rib relapse. This week in October 2008 we learned of his BIG relapse
and started that horrific high dose chemo. And now in 2009, here we are again about to slam him with chemo.
I've spent the morning telling every nurse and doctor I've seen that he needs EVERY anti-nausea drug possible
UP FRONT. They have this "let's try this first and see how it goes" attitude. NOT!!! I want everything they've
got NOW. None of this trying to playing catch-up while he pukes his brains out. I think I have them convinced.
He's asleep now, zonked by the pre-meds. The chemo he'll be getting today is vincristine, cyclophosphamide and
topotecan. He's scheduled to go back to the Ronald with IV hydration, a zofran drip and something else that I
forget right now......necessitating 3 backpacks to carry it all. Plus a couple of oral meds "just in case".
Please pray that these meds work and he is not tormented with horrible nausea and vomiting.
And on a completely different track......
Two exciting fundraising corporate partnerships to tell you about. I'm a bit late with this first one....it
started in August and is ending Nov. 1st, BUT it's a partnership with Philosophy, a line of skin care products,
who are donating 100% of net proceeds of the sale of their Chocolate Chip Cookie shower gel. We really want to
take advantage of this opportunity and max out the potential donation which is over $30,000. The bottle of
shower gel is HUGE and lasts for months. See blurb below from their site and Visit...
Makes great gifts! Charity shower gel benefiting cookies for kids' cancer
indulge your senses with philosophy's chocolate chip cookies high foaming shampoo, shower gel & bubble bath.
this extra rich and creamy formula provides a gentle, high foaming lather and smells absolutely delicious, like
chocolate chip cookies fresh from the oven. it's gentle enough for everyday use and leaves skin and hair feeling
ultra clean and soft. when you purchase chocolate chip cookies high-foaming shampoo, shower gel & bubble
bath 16 oz. for $16, philosophy will donate 100% of the net proceeds to cookies for kids' cancer. AND....
Glad (the plastic wrap/bags folks):
Beginning in November, you’ll see packages of Glad Wrap products with the Cookies for Kids’ Cancer logo and
information about the organization and pediatric cancer. The information will be on more than one million
packages which is a tremendous awareness opportunity. The official partnership kickoff is in a few weeks but you
can catch see a sneak peak if you go to www.glad.com and click on Glad to Give. Also, if you’re on Facebook,
check out the Glad to Give fan site. Glad’s corporate headquarters, Clorox, held a very successful bake sale
recently in their California offices and raised more than $8,000 in a few hours. (You can see pictures of their
bake sale on the Glad to Give page on Facebook.) They have plans for bake sales in all 40 of their locations
across the country before the end of the year. Thank you to those who have registered bake sales for November or
December. Glad is matching ALL funds raised in November and December up to $100,000, including cookie sales. We
want to fully capitalize on this opportunity. Every effort helps and no amount is too small in helping reach
the match potential this fall. If anyone has any questions or is looking for ideas/suggestions/support, please
don’t hesitate to ask. If any of you have any other brand outside of Glad lining your trash container, wrapping
your sandwich, or storing your leftovers after November you might not be able to look at yourself in the mirror
without feeling guilty!!
As always, thank-you for your prayers for Ryan. He needs them now more than ever (I feel like I've said that way
too many times before). “I have held many things in my hands, and I have lost them all; but whatever I have
placed in God's hands, that I still possess” - Martin Luther
Love and "100% hope",
Norma and Paul
OCTOBER 9, 2009
Hi everyone,
Ryan's treatment will be the week of 10/19. We are heading to NY on 10/14. We'll do some blood work and check-up
on the 15th and 16th, then Ryan will start his chemo on Monday, the 19th. Ryan's VMA was down to 15, still
elevated but down from 17 in Aug. and a high of 23 in July. His bone marrow biopsies were positive.
I really can't stop thinking about how shocked the docs in NY were when they saw Ryan looking and feeling so
good. If you saw his scans, you'd be shocked too. The fact that he is not in any pain is a minor miracle. He has
quite a bit of disease in his legs, particularly around his knees. A couple of days ago he was walking across
the hardwood floor ON HIS KNEES!! No pain, nothing. Heck, MY knees would hurt if I did that! I have to believe
God is at work here, keeping Ryan strong for this next phase of treatment.
There is a Solemn Novena to St. Jude (the patron saint of impossible or difficult causes - which is most
definitely where we're at) taking place at the National Shrine of St. Jude from Oct. 17th-25. Ironically (or
maybe fortuitously), Ryan's 1st week of treatment will fall during these 9 days. For anyone so inclined, either
on your own or by visiting www.shrineofstjude.org, please consider joining this novena to pray to St. Jude for
Ryan's healing. You can submit a petition via the web site if you like and the novena prayer is on there too.
Thank-you.
Since Ryan will miss Halloween at home, we are having a Halloween party for him on Sunday. Most of his
classmates are coming which is great. Should be a lot of fun! Now if I can just get the horrible
plastic/chemical/blecht smell out of his Voldemort costume mask, we'll be all set. It reeks so bad he can't
wear it without choking and gagging!
LOTS to do before the 14th......Matthew's 6th grade class is going on a 3-day Nature's Classroom outdoor
education trip to New Hampshire at the end of the month, which I most likely will not be here for, so gotta get
that stuff all pulled together now.....the Halloween party......packing for a long NY stay (possibly a month or
more).......and a thousand other little details.
I guess I'd better get crackin'!
Please keep all our NB warriors and angel families in your prayers. Especially our friend Sydney who we met in
VT (www.carpages.com, type in "sydneymarie"). She just had scans that did not bring good news. She too is now
off the TPI-287 study and in need of a new plan. Please pray for wisdom and guidance for her doctor and
parents.
As always, thank-you for your prayers for Ryan. As we move into flu season we are worried because Ryan's counts
will be very low for some time with this treatment. Please also ask God to shield Ryan from any infections of
any kind and for his blood counts to recover quickly.
Love and "100% hope",
Norma and Paul
OCTOBER 1, 2009
Hi all,
First of all, Ryan's MIBG scan is stable, brain MRI clear, CT shows the tumor in his back may be a bit smaller,
but certainly at least stable (bone marrows are still pending). We are happy with that. Stable is what we were
praying for.
"I love it when a plan comes together." - Hannibal Smith, The A-Team.
Yes, we have a plan. Get comfy and grab your coffee. Lots of info.
Ryan made quite an impression on the docs and nurses at Sloan. I think with two progressions since we were there
last, they expected him to look like he had.....I dunno......progressive stage IV cancer or something? They were
REALLY surprised and amazed at how well he looks and feels. I'm talking bug-eyed, jaw-dropping
amazed.....seriously! The Amazing Super Ryan showed 'em what he's made of!!!! And their reaction made us step
back and realize, despite the setbacks, turmoil and anxiety of the past few weeks, how we still have much to be
thankful for. AND, we were told it was a factor in their decision to let Ryan do the NK (natural killer) cell
trial we've been hoping to get him into since August. Yup! We're in! I think if he'd come in looking like he'd
been dragged behind a horse, they would not have recommended it. The decision was ours though. Dr. Modak said
there is no right or wrong decision and that we could wait a bit and do more cytoxin/velcade since it has kept
him stable and offered a good quality of life. But we're not comfortable running the risk of more progression if
we stay with a low-level treatment. Our goal is not stable. Our goal is to gain ground. Dr. Modak thinks we can
hold off on surgery for now since the tumor is not causing any cord suppression or pain. We're okay with
waiting on that. No one knows if the NK cells will work on soft tissue disease. It's too new. We also don't
know how it will work on someone with as much disease as Ryan. The first child who did it and was cleared had
minimal (though refractory) disease. We hear there is another child who is supposed to start NK soon, so Ryan
will be either the 2nd or 3rd child to receive NK cell therapy for neuroblastoma. He will definitely be, by
far, the one with the most disease though.
Here's what's involved. 3 days of high dose chemo (cytoxin, topotecan and vincristine). This is mostly to
suppress his immune system so it won't cause graft vs. host disease when the "foreign" NK cells are infused. In
theory it could help with disease reduction, but Ryan is very chemo resistant. Day 4 he rests. On Day 5 which
will be a Friday, he will have the NK cells infused. The following Monday he begins one week of 3f8 antibodies.
That's it for the treatment part. Though none of the aforementioned technically requires hospital admission, his
blood counts will crash and he will almost certainly get a neutropenic fever requiring admission. Prior to
that, if during the chemo we can't manage his side effects well enough (as happened last October) he may be
admitted to keep him on 'round the clock IV anti-nausea meds. Oh, by the way, turns out I'm the match for the
NK cell donation. Or, I should say the miss-match. Dr. Modak said that they don't want you to be a close match.
I said "huh??" to which he said it was very, very complicated to explain. Since our ability to absorb
information had long since expired, we just left it at that. So the day before the NK cells will be infused, I
will have those cells harvested. It's approximately a 3-hour process where they draw blood from one vein,
somehow take what they need from it, and then return the rest to me in the another vein. Sort of like stem cell
pheresis for you NB parents out there, or similar to the platelet donation process (though longer). They sucked
a bunch of blood out of me yesterday for testing to be sure I have no issues (HIV, etc.). I'll have to have a
physical right before as well. As for the timing, we're waiting to hear exactly. It will be either the week of
Oct. 12th or the week of the 19th, depending on some staffing issues. We would need to be there the Thursday
before.
So how do these NK cells actually work?? Well, they work to kill the NB 3 different ways. That much I remember.
All were explained to us. 2/3 was over our already overwhelmed heads and quickly evaporated anyway. And the
other 1/3 I'm not totally positive about either so please don't anyone quote me on this but if we're remembering
it correctly, the 3f8 which seeks out a marker on NB cells, gives the NK cells a piggyback ride directly to the
cancer cells where they proceed to KILL, KILL, KILL. Better targeting, more dead cancer cells. Hopefully. NK
cells (which are a type of T cell) hang around for about 30 days and then die off so you want them to hit their
target ASAP.
It was a long afternoon waiting for the team to finish their weekly meeting where they discuss current patients
so we could find out what, if anything, they were recommending. We had been asked to hang around to talk after,
which turned out to be around 6 p.m. It sort of felt like waiting to hear from the Governor about your stay of
execution. Or in this case, your child's. But, our prayers were answered. We're in.
However, the timing kinda sucks. This will require a long stay in NY. Whichever week we end up doing it, Ryan
will miss Halloween at home AGAIN. For the 3rd year in a row!! We haven't actually mentioned that part to him
yet though.
On the lighter side of things.....
It certainly was weird to be back in NYC after 10 long months. It was good to see many familiar faces at the
Ronald and the hospital. Some old 3f8 buddies were there for scans and we got to hang out and catch up, which
was nice. But we were also sad that many staff we had hoped to see at the Ronald, the hospital and even Delizia
have moved on. Such is life. And we've now been going to NY long enough to be the veterans of not one, but two
kitchen renovations at the Ronald.
Barbara from Candlelighters NY worked her usual magic and arranged for Ryan to have a private tour of FAO
Schwarz. A very nice toy soldier took us around the WHOLE store. Very cool. And Ryan walked out of there with a
bucket of candy and a ginormous Nerf gun. Not too shabby. Oh, he even got to try out the famous floor piano
(remember Tom Hanks in "Big"?). It was a nice reward after being stuck in nuke medicine for his MIBG scan for a
total of 3 1/2 hours! Thank-you Barbara!
And...
There are many friends and family who have "been there" for us time and again on this long journey and to whom
we are eternally grateful. It is often impossible to personally acknowledge and thank everyone, every time, but
with this most recent trip to NY, we want to thank Uncle Bob for driving Ryan and me down to NY, and Grandma,
Grandpa and Auntie Mary for staying with Matthew when Paul and I both had to be in NY this week.
In particular we want to acknowledge the many years of unwavering friendship, support and help way, way, way
above and beyond the call of ANY friendship - our own angel on Earth Kathy Weaver. Thanks to Kathy, these many
years of Ryan's treatment, when I or both of us had to be away, she has made sure that Matthew made it on the
bus, off the bus, been fed, taken to karate, etc., etc. (often on very short notice). She has generally been a
second mother to the boys and a cherished friend to our family. Even fed our pets the times we all have been
away. We humbly thank Kathy and all who have helped us in so, so many ways. We don't know what we'd do without
you!!
Please continue to keep Ryan in your prayers. He has a rough road ahead with this treatment.
Love and "100% hope",
Norma and Paul
P.S. HAPPY 12th BIRTHDAY TO MATTHEW!!
SEPTEMBER 23, 2009
Hi all,
Just a quickie.
After weeks of waiting, e-mails, waiting, phone calls, waiting, more waiting.....oh and......some more waiting,
as well as last minute "do we zig or do we zag" decisions, we finally have at least the beginnings of a plan. We
head to NY tomorrow (Thurs) for a scans. We have our foot in the door!!!!! Though nothing is finalized, Ryan is
still at least eligible for the NK trial. And the surgery thing is up in the air. Dr. Modak thinks that perhaps
since the tumor is no longer causing him pain, we may be able to skip surgery and go straight to treatment. He
needs to talk more with Dr. LaQuaglia (the surgeon) on that. We, including Ryan, would prefer to get that sucker
out of there, but we'll see. He has been feeling great and attending school when we're home. His blood counts
held up better than they did with the previous round of chemo, so we're happy about that.
So it is not without trepidation that we again veer off in a new direction, hoping and praying that God is
leading us where we need to be. Ryan has completed 3 rounds of the oral cytoxin/velcade, a relatively mild chemo
- which Ryan dubbed "chemo light" (no fat, no calories, no puking and no hair loss). Please, please, please
pray that these scans show at least stable disease. Improved would be nice, but we know not to set ourselves up
for disappointment.
Okay, as much as we want to be in NY for this treatment, I have to admit I'm a little disappointed we'll be
trading the Fall foliage in VT for the....uh....cement of NYC. However, Ryan is actually looking forward to
returning to NY. He has lots of friends there he misses. The docs, nurses, his teacher, his waitress friends at
his favorite restaurant, Delizia. But that's not to say we won't also miss our new friends in VT. Dr. Sholler
and all the staff at Vermont Children's are wonderful. The staff and volunteers at the Ronald McDonald House
are super too. And of course the other NB families we met as well.
Well, off to pack now.
Please ratchet up those prayers for good scan news and a signed, sealed and delivered plan of action. This limbo
thing has been torture!
And keep all our NB warriors and angel families in your prayers as well.
With love and "100% hope",
Norma and Paul
SEPTEMBER 8, 2009
Hi all,
Things have been moving at a snail's pace, hence no updates for a while. We've been waiting and waiting and
waiting for NY to get back to us about surgery to remove the tumor in Ryan's back and getting him enrolled in
the NK cell study. When your child has progressive disease, waiting IS NOT AN OPTION. However that is what we've
been doing, all the while fantasizing about taking this Doctor Who Shall Remain Nameless, grabbing him by the
shoulders and shaking him till his head rolls off. But, we need him. So it will remain a fantasy (maybe).
Anyway, this Saturday morning, after many sleepless nights and a panic attack or two, we get word from Dr.
Sholler (Ryan's VT doc) that NY had finally gotten back to her and they want to do the surgery Sept. 28th. This
means we are back in VT today (Monday) for another round of cytoxin/velcade. Had they been able to schedule
surgery within the next 2 weeks, we would have skipped chemo to preserve his blood counts. We were supposed to
have had this info about the surgery by the end of the day last Wednesday so we would know whether we needed to
go to VT this week or not......and we got it Saturday morning. G-r-r-r-r-r! Oh, and despite asking, we still
don't know which of us is a match for the NK cell donation Ryan will require. To say we are frustrated with
Sloan is an understatement. It feels like since he's not in active treatment there right now, he's at the
bottom of the priority list. *sigh* Prayer Request No. 1: that Ryan moves up the list. Way, way up.
On the plus side, Ryan has been feeling pretty good. He did need a blood and platelet transfusion the week
before last, but just once and his counts have rebounded pretty well. Still, he will finish this chemo on the
15th and I'm not sure that will leave enough time before the surgery for his platelets to recover. We'll see.
No pain at all so I assume the nasty tumor is behaving itself for now. Prayer Request No. 2: that Ryan's counts
recover quickly and they don't delay the surgery.
Everyone is worried about Swine Flu these days, even if you're otherwise healthy. Ever notice that almost every
time they report a Swine flu death, they mention the person had an "underlying condition". So Ryan has the
grandaddy of all underlying conditions AND once he starts the NK cell treatment, will be extremely
immune-suppressed as we head into high flu season. Like we needed one more thing to worry about. Prayer Request
No. 3: that God will shield Ryan from any and all infections/viruses/nasty stuff.
The boys started school this past Tuesday. With all the uncertainty about his treatment schedule, we weren't
sure Ryan would be able to make the first day, but he did and was very happy. I have to cringe though every
time I overhear a parent rejoicing at the start of school, thrilled that the brats are out of their hair 6
hours a day. Especially hard to hear after attending the funeral of our sweet friend and very brave warrior,
Owen Lea, last week. He is buried just steps away from another of our NB friends, Grace, who passed away 2
years ago next month. If only these parents could sit down with just one of the very long list of parents I
know who would give anything to have their child underfoot, tracking dirt into the house, and calling "mommy" a
hundred times a day. Perspective. Prayer Request No. 4: For the Leas and all our angel families.
On a much happier note, Ryan got a very special surprise recently. His wonderful teacher, upon hearing about his
disease progression in July, took it upon herself to write a letter to Ryan's favorite author, JK Rowling,
telling her about Ryan and all he's been through. Well, two weeks later the FedEx truck pulls up to her house
with a BIG box from you know who. We were in VT at the time and it took a couple weeks before we could get
together to open this box. In it was a signed letter from JK Rowling telling Ryan how special he is. And there
were several presents. Harry's wand, a plush Fluffy (the 3-headed dog), Harry Potter 20 Questions, and a
beautiful TriWizard Cup. It was really something and Ryan was thrilled!! Thank-you so much Mrs. Regan (and JK of
course)!!
Please remember that September is Childhood Cancer Awareness Month and September 12th is Childhood Cancer
Awareness Day. We need as many GOLD ribbons out there as PINK ones. Check out these sites for gold ribbon and
childhood cancer awareness merchandise: http://www.goldribbons.com/products.html and http://www.zazzle.com/childhood+cancer+awareness+gifts.
Thank-you for keeping Ryan in your prayers. Much will be happening in the coming weeks/months so please don't
let up!!
Love and "100% hope",
Norma and Paul
AUGUST 18, 2009
Greetings from the Green Mountain State,
Scans are done. Results are in. All the same boney lesions are still there. Not any bigger though. No new
lesions. The tumor in his back is a "teensy" bit smaller. I looked at the scan yesterday wtih Dr. Sholler and
could compare it to the last scan. You can see where in the last scan the tumor was pushing in against teh
spinal cord and now it is not. Looking at it from other angles, it looks a bit smaller overall. Radiation can
take many weeks for the full effect to be realized, so it could conceivably still shrink more. Yes, it is good
scan news and we are of course enormously grateful for no new progression. But once again, we had so hoped that
something new that we hadn't used before - the Velcade - would help us gain some ground on those stinkin'
subborn $%*&@ boney lesions! AARRRGH!
Yesteray Ryan started a 2nd round of the same chemo, oral cytoxin and velcade. So, we will once again hope and
pray for continued "stable" disease with this round. No illusions of it getting better with this stuff. Even
though his counts held up pretty well with the last round, never coming close to needing transfusions, this time
we're starting out with much lower numbers. Certainly high enough to start chemo but I'm thinking this time it
is much more likely he'll need blood products, particularly platelets. Last round his platelets started off in
the 150's and bottomed out at 50. Yesterday he only started off at 87. You can do the math. This might be a
good time to mention that blood donations are ALWAYS needed at Boston Children's Hospital, especially platelets
which have a very short shelf life. And especially in the summer when everyone is off on vacation. For more
info, visit http://www.childrenshospital.org/about/Site1394/mainpageS1394P6.html. Parking is free. Platelet
donations require an appointment.
Dr. Sholler is sending these scans off to Dr. Modak at Sloan and will try to get us a surgical consult there
with Dr. LaQuaglia. Surgery is pretty much the only way we'll get rid of that tumor in his back. He likes to
see a response to other treatment first and we got that, so hopefully he'll be willing to take this on (but
feel free to say a prayer or two for that). Before Ryan went to camp, we all went into Dana Farber to have our
blood drawn and sent to Sloan for testing to see who will be a good match for the NK cell treatment. Matthew
was a trooper, having never had blood drawn before. Please pray for a really, really, really good match from
one of us.
Since summer has FINALLY arrived in New England, the boys and I had a GREAT day on Saturday at a nice beach on
Lake Champlain. Ryan, who's usually pretty timid with the big waves at ocean beaches was very daring and went
out chest deep and loved every minute of it. Matthew of course is daring no matter what. We all had a lot of fun
with lots of smiles. One of those "freeze frame" days. :-)
We have many, many of our NB friends going through difficult struggles at this time. Please pray for our sweet
little friend Owen Lea Owen Lea as he is nearing the end
of his journey. and also Ryan Regan Ryan Regan who
recently relapsed and is recovering from high dose chemo. Many more of our friends are scanning this week
and holding their breath. Ylaria , our NK cell therapy
pioneer, is awaiting final scan results. Please pray for a good response to this treatment.
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 8, 2009
Hi everyone,
So someone explain to me how our government has 2 BILLION dollars sitting around doing nothing that can now
be available for the "cash for clunkers" program, but not for pediatric cancer research. I'm all for the
environment and stimulating the economy, but really. Has any child ever died because mom and dad's car wasn't
fuel efficient?? Okay, I'd better stop right there before I stroke out.
Anyway Ryan is winding up his week at Hole in the Wall Gang Camp. We dropped him off on Monday. Last weekend
was a blur having just returned from our vacation and needing to quickly do laundry, gather up everything he
needed and repack. And we will no sooner pick him up tomorrow (Sunday), do a repeat performance of
laundry/repacking and then hit the road again on Tuesday for VT and.....s-s-s-s-s-scans. Needless to say, these
scans are HUGELY critical. Please, please, please pray for at least stable. I have to assume that the tumor in
his back must be smaller since he has not had any more pain. Sounds reasonable, right? Our abbreviated
vacation was good and we were glad to be able to get away and decompress. The weather wasn't perfect but close
enough and we enjoyed a lot of pool time, go-carts, mini golf, Audubon sanctuary and the drive-in. Ryan was very
happy he was finally tall enough to drive the go-carts by himself!
He's been feeling well. We needed to get labs done while down at the Cape because his liver enzymes had
skyrocketed just before we left Vt. Dr. Sholler wanted them checked to be sure they were coming back down, which
they are. Apparently the Velcade he was on can cause this, We were disappointed though to see his platelets had
dropped to 50. This treatment wasn't supposed to affect his counts much so that was a big drop from the 150's -
160's he'd been in. His other labs were good though. While we were on vacation we finally heard from
Dr. Modak at Sloan. We've gotten the wheels in motion to get him signed onto the NK cell study. We first need
to have blood drawn and tested from all of us (including Matthew) to see who is a match for Ryan. The blood
draws will happen here in Boston on Monday and be sent to NY for testing. The treatment itself would consist of
3 days of high dose chemo, followed by infusion of the donor cells from one of us, then a week of 3f8. He will
get pretty sick from the chemo and likely end up inpatient with a neutropenic fever. Given his past history, it
could be a LONG stay and may require his last bag of stem cells. The earliest we would be going to NY - if all
goes smoothly - is the end of August. Even if his disease has progressed with these upcoming scans, it would not
preclude him from the study. If the scans are stable of improved, we can do another round of the oral cytoxin
and velcade in VT, which would start next Friday. Oh, and Dr. Modak said there was a possibility that we could
do surgery on the tumor in his back before starting the NK trial. It's his only soft tissue disease and is
unlikely to disappear otherwise. So, Dr. Modak said to plan on roughly 6-8 weeks in NY. UGH! But, we need to get
aggressive again and this is our most promising option. There's been just one other child who has completed the
NK cell treatment. She tolerated it reasonably well. Please pray that little Ylaria has a great response.
It's been a particularly difficult week for some of our NB friends. Ryan did 3f8 treatment together with Ryan
Regan back in 2005. He's been NED for 4 years! And now he has just relapsed and is experiencing a lot of pain.
Please pray that he will be NED again very soon.
Several days ago I got a call from my good friend Karin Lea telling me that Owen had taken a sudden and
dramatic turn for the worse and that she and her husband were forced to make the most agonizing decision any
parent could have to make. Owen is now on palliative care. He has been valiantly battling NB for 6 years, always
managing to bounce back from multiple relapses. He is an amazing little boy. Almost every NB parent out there
who's met Karin has a story about how strong, positive and uplifting she always is. No matter what scary thing
was going on with your child, you always felt better after talking to Karin. She talked me off the ledge many
times. No matter what scary thing was going on with Owen, she focused on just getting on with it and moving
forward. Please pray that the remainder of Owen's journey is peaceful and pain-free. And pray for strength and
peace for Karin, Dad Randy and big sister Shannon as well.
Well, that's about it for now. We will update again at the end of next week when we have scan results.
Thank-you for all your prayers for Ryan and all our NB warriors and Angel families.
Love and still hanging onto "100% hope",
Norma and Paul
JULY 25, 2009
Hi everyone,
Ryan is doing well, with minimal if any pain. He's still on the steroid which seemed to do the trick. He started
his radiation and chemo this past Monday and so far so good. We originally thought the radiation would be for
10-12 days but they decided to do it 2x/day over 7 days. However, the first treatment wasn't until very late on
Monday so only one session that day. Consequently, the last treatment will be next Tuesday morning for a total
of 12 sessions. This coming Monday will be his last day of chemo. He's been a bit more tired than usual, but
otherwise no side effects so far. His counts on Thursday were still good.
So, since his radiation schedule got shortened considerably and since neither we nor Dr. Sholler have heard
diddly squat from Sloan, it looks like we can salvage our vacation after all. Paul and Matthew went home this
past Tuesday and they will head down to the Cape today. Ryan and I will join them this coming Tuesday after his
radiation - a few days late, but so what! AND, since he won't need to be in VT again until the 2nd week in
August, it appears, as of this writing and always subject to change, that Ryan can also attend Hole in the Wall
Gang Camp the first week in August too - barring any sudden summons to NY. So, things are looking up in at least
some departments. Eeking out some fun/family time for the remainder of the summer is very important to us.
We'll hate being away from him for that week at camp, but it means SO, SO much to him to go. Please pray that
this rainy weather pattern we've been in ALL SUMMER changes and the next two weeks bring lots of sunshine and
warm weather.
Getting back the radiation, they are hitting the tumor from two angles. Straight on from the back and then also
from the right side., He has to lie on his stomach for the treatments. Mucocitis is a possibility since his
esophagus will get hit. Ryan was very happy that they did not do tattoos this time (painful), just used these
clear stickies with marker. He just has to be careful showering so the stickies don't come loose. The chemo part
seems to be going well too. It's 2 pills once a day.
Since he has several hours in between radiation sessions, we've been trying to squeeze some fun in. We've seen
the new Transformers movie, the new Harry Potter movie and Ice Age 3 and also spent some time at Pizza Putt
which has mini golf, arcades and, of course, pizza. He's really enjoyed all that. We have a few options for some
weekend activities too - some are weather dependent - but some indoor stuff too.
We want to thank everyone who has sent messages of support and encouragement. "Hope" got a lot of attention in
those messages. "Hope and denial are two very different things that the uninitiated
confuse, one has absolutely nothing to do with the other. Without hope we have nothing."
-and- "The 'hope' thing is there--just look into Ryan's beautiful eyes." - are just a couple that stand out. And then there was the message from another NB mom who
reminded me of words to a great song called "Courage Is..." which she posted on her son's site a while back.
...Courage is When you're afraid but you keep on moving anyway
Courage is When you're in pain But you keep on livin anyway You keep on living
anyway
It's not how many times we've been knocked down
It's how many times
You get back up....
Ryan's courage is unbelievable. Yes, he's weary and angry, but also determined. We talked quite a bit the other
night about the "why" of his cancer. No small subject to tackle. I told him that someone once told me "Ryan has
brought a lot of people back to prayer." (remember that Mal?) Needing an answer to the "why" myself, I decided a
long time ago that that was Ryan's mission.......to save a few souls.....or maybe a lot of souls. He seemed
pleased with that. Proud even. Ironically, people's "mission" in life was the topic of a recent homily in
church. He was apparently listening and made the connection when we talked. He said he thinks he might be the
only kid in church who's actually listening. He paused, then added that I should send out an e-mail to all the
Hold-Outs out there to get on board already!!! He is indeed weary, wants to finish his soul-saving mission and
get back to being a kid. So, there you have it Hold-Outs. No sense resisting the Amazing Super Ryan's powers any
longer!
And at the opposite end of the Ryan Spectrum, it appears most of you out there approve of him swearing!! Okay,
maybe not ALL the time, but at least where cancer is concerned. And he has exercised his new privilege, off and
on. Whatever works. I had a couple of people tell me of a recent news story about swearing making you feel
better.
So we're incredibly frustrated and worried about the deafening silence from NY, although another NB mom I talked
to yesterday is waiting on them too and has heard nothing as well. We need to have our next step mapped out
ASAP. At a minimum, he can do another round of this cytoxin/Velcade in 3 weeks, which would be the week he
returns from camp and the week he'll be re-scanned.
One day at a time,
The Pan Mass Challenge bike ride benefiting the Jimmy Fund is fast approaching in early
August. We are so touched that our good friend Jim Shine will be riding in honor of Ryan. He has designated his
donations to go to a special neuroblastoma research fund at Dana Farber. It's hard to ask for donations in these
tough economic times, but AS WE CAN SEE FIRSTHAND, please keep in mind that neuroblastoma doesn't care about
the economy and won't slow it's onslaught on our children until we can afford to fight back. No amount is too
small. To sponsor Jim, follow THIS LINK and enter the name "Jim
Shine" which will bring you to the donations page. Our heartfelt thanks to Jim and all the PMC riders,
including Team Eradicate which has had Ryan as their Pedal Partner for 3 years now.
Please continue to pray for our sweet boy and all our NB warriors.
Love and.......okay here goes....."100% hope",
Norma and Paul
JULY 18, 2009
Hi everyone,
It's Friday and CANCER SUCKS!!
Imagine this. You look out your 2nd story window down to the street below. You suddenly see a huge tractor
trailer barreling down the street. Simultaneously, you see your child playing in the street completely oblivious
of the danger. The truck isn't stopping. In an instant, you realize there is no humanly possible way for you to
save him/her. You are helplessly watching your worst nightmare unfold before your eyes. Run that scene thru
your brain a few times and then you will have an inkling of what it is like to be a neuroblastoma parent. Our
nightmare though is in slow motion, dragging out over 5 1/2 years now. Some cancers do move swiftly and it's
over. Others, like Ryan's, move more slowly. Playing a game of cat and mouse with us. Now you see it, now you
don't. It's gone? Nope, here I am! Ha-ha! Or my other analogy. The horror movie zombie that won't die no matter
what you do. Every time the hapless victim thinks it's dead, it rears up again to mercilessly attack. No matter
how many times you stab it, shoot it, etc., it just keeps coming at you.
Tuesday night, the night before we leave for scans and treatment in VT, Ryan tells us his back hurts. NB kids
are notorious for deciding RIGHT before scans to tell us parents something hurts, give us a heart attack, only
to say it's okay an hour later. Wednesday it still hurts. Thursday it still hurts. Now it hurts in the front of
his ribcage too. Paul and I are rationalizing all possible NON cancer reasons for this. He was horsing around
with his friend the day before. Maybe pulled a muscle, twisted the wrong way. Growing pains? Ribs grow, right?
We convinced ourselves it was another one of the many false alarms. There'd be a logical explanation and/or it
would go away on it's own.
So.....figured out where this is going yet? We hit Ryan's disease with a chemo version of a veritable nuclear
bomb last October and barely got anything out of it except 2 1/2 weeks of chemo hell. Nine months later, his
disease has progressed yet again. He has more disease right now than he's ever had with the exception of at
initial diagnosis. He is off the TPI-287 study. We are frantically scrambling to figure out our next move.
Sending reports to Sloan, phone calls, meetings, e-mails, faxes, etc. Dr. Sholler was on vacation this past week
but we will meet with her on Saturday. We did meet with the radiation oncologist here today. He feels strongly
that we should hit Ryan's paraspinal tumor with radiation immediately. It grew by 30% since his May scans. It is
now causing him this pain. Ryan has never been symptomatic before. He has never had pain before except from
surgeries or 3f8 treatment. This "thing" is worming it's way into Ryan's vertebra and will undoubtedly soon
cause spinal cord compression if not hit right away with radiation.
Did I mention CANCER SUCKS??
Scans were Thursday. It was a very, very long day of waiting for results. The usual people who read these scans
weren't in. Someone less familiar was looking at them. As I said, Dr. Sholler was away on vacation with less
than optimal cell phone coverage. We needed answers to know if we could proceed with his treatment on Friday.
Finally we hear. Progression. He's off the TPI study. Somehow, I just knew all day that it wasn't going to be
good news. That morning we were rushing around to get to his scan by 9:00. About half way to the hospital I
realized I'd forgotten to put on my eye makeup. Not a big deal but I remember thinking it was an omen. Like on
some sub, sub, sub conscious level I knew the pain was the real deal and I'd be crying today so might as well
not smear mascara all over my face.
The boys knew we'd been hanging around for these results, so as we were leaving Ryan asked about it. I told Ryan
the reason he was having the pain in his back was because the tumor got bigger. All he said at first was "when
we get to the car, I'm going to say a bad word". I said "okay". He said "really??" I said "yup, you've earned
it." Matthew asked if he could too. I said "sure". I'm thinking he's earned it too. So the three of us proceeded
to sit in the car in the parking garage and swear at cancer. He now has permission to swear at or about cancer
as he wishes. Like I said, he's earned it. So far he hasn't abused the privilege. Maybe I'll ask him to keep it
to just around us and not in public. This policy probably won't win me any parenting awards, but I SO don't
care about propriety at this point. So he knows we have to do something different. Friday we went back to the
hospital so Paul, who had immediately driven up Thursday night, could look at the scans too and be here as we
figure out our next move. We also met with the radiation oncologist who, as I mentioned above, feels that
immediate radiation is necessary. Ryan met him too and knows we'll most likely be here for the next week and a
half or so for the radiation. Before we left we picked up two prescriptions. One for a steroid to hopefully
reduce any inflammation the tumor is causing so as to help reduce pain. And the other was the painkiller
oxycodone.
Friday night he sat down next to me on the couch and I knew he had things on his mind he needed to talk about.
So I let him talk and told him he could ask anything. The only thing I wasn't up front about was the extent of
his disease. Aside from the aforementioned tumor, I only said he had a couple of other spots on his legs, which
was leaving out a lot. So, he said he was worried/scared about not knowing what we were going to do and where.
So I explained that we needed to talk to Dr. Sholler on Saturday and get her recommendation. I also told him
that we're talking to NY as well and getting all these great minds together to figure out what's best. I said
that NY has a new study he would likely qualify for (the NK cell). He seemed pleased at the possibility of
returning to NY. He misses his friends there. He started looking a little weepy and I asked what was on his
mind. He asked if there'd be chemo. I told him probably. Through tears, he asked if he'd lose his hair again.
That's what's bothering him the most. Not the pain he's in, but losing his hair again. I had to tell him it was
possible depending on what treatment we did and he started to really cry. We talked some more and covered a lot
of ground. He ended it by saying "f---ing cancer. I'm just sick of it." Ditto.
CANCER REALLY, REALLY SUCKS!!
We had SO hoped to give Ryan (and Matthew) a nice summer of fun and minimal disruption from treatment. TPI was
giving us that. Now, summer just got shot to hell. No Cape vacation at the end of July. No Hole in the Wall Gang
camp the first week in August. Radiation instead. Chemo instead. We're so angry. I'm thinking that you probably
already picked up on that tone already though.
So, we will fight on, still clinging to Ryan's "100% hope". Others might call in 100% denial. Another NB dad, a
very religious man, ends his daughters updates with "Trust and do not falter". Trying Ron. Really, really
trying.
SATURDAY AFTERNOON UPDATE:
Met with Dr. Sholler earlier this afternoon. So kind of her to come to the Ronald to meet with us. So here's the
plan. She agrees that the immediate radiation is a must. We think we can do both the simulation AND 1st
treatment on Monday. She is also recommending a drug called Velcade which targets a particular pathway and is a
drug they've had good success with. It will be in conjunction with oral cytoxin and all will be concurrent with
the radiation. Hitting the disease simultaneously with all three usually works for a better response. We know of
two kids who have had a very good response from the Velcade. This shouldn't hit his counts too much, but with
Ryan you never know. We want to keep him strong for whatever treatment comes after this, such as NK. We have to
find the balance of being aggressive enough to put a stop to the disease progression and reduce that tumor next
to his spine, but not so aggressive that we slam his counts so hard that we can't do another treatment right
after. Dr. Sholler feels good that this is a viable option to achieve that balance.
We also asked about the possibility of trying to get more stem cells out of him since we only have one bag left.
She was supportive of giving it a try. We can start the GCSF shots after this phase of his treatment, check his
blood after several days and see if there's any indication that we can be successful. She will be in touch with
Sloan about all of this because we would most likely do a stem cell harvest there since that is where we're most
likely to actually use them. Dr. Sholler is also contacting Dr. Maris at Children's Hosp. of Phil. about an
ultratrace MIBG study open there right now. That one would definitely use his stem cells. We just want to have
all possible options in front of us as we move forward after this radiation/chemo we're starting Monday.
Overall, we're feeling a tiny bit better about things. It's all still terrifying, but the uncertainty of no plan
is even more torturous. A plan is DOING something, not languishing in limbo.
This afternoon, Ryan is feeling good. No pain right now. NOT happy that we're stuck here for an extended time. I
haven't mentioned the vacation and Hole in the Wall Gang camp yet. Haven't worked up the nerve. He's going to
come unhinged.
Needless to say, he desperately, desperately needs your prayers. It's all so frustrating and discouraging. When
is this kid going to catch a break???
Well, to those of you who have bothered to keep reading this whole opus, sorry it got so long. Just too much
information and too much emotion to be concise.
We'll do a (shorter) update probably later in the week.
Trying to hang on to "100% hope",
Norma and Paul
JULY 8, 2009
Hi all,
Cycle 4 of TPI-287 is complete!! We got home Saturday the 4th and are now enjoying a week off from treatment. We
do have to make a trip to Boston to the Jimmy Fund Clinic for a check up and labs tomorrow (Thursday), but
that's all. Ryan continues to look and feel great! When we return to VT on the 15th Ryan will have his scans and
bone marrow biopsies before starting Cycle 5 on the 17th. Getting nervous already. Please, please pray for good
news!!
We did have some fun in Vermont. We visited Shelburne Farms where the boys got to bottle feed baby goats that
were just days old (thanks for the tip Rhonda)! They make cheddar cheese at the farm so we also got to see some
of that process which Ryan really liked. He loves cheese so much he should have been born in Wisconsin! Oh, and
Ryan got a turn milking a cow - Matthew passed on that but he and I both held a chicken (not sure why....just
because we could I guess). Then we took a walk on a trail that led to a beautiful view of the mountains. Friday
night we watched the fireworks display over Lake Champlain. We had a great view right from the Ronald - no
crowds. It was raining a bit but they did the show anyway and we stayed dry on the porch. The last time we saw
4th of July fireworks was in 2005 in NY when we were at THAT Ronald McDonald House.
Please keep all our NB warriors in your prayers but this week especially our little friend Evan Lindberg. Evan has had a CNS relapse (in the "dura" or lining of
the brain) and will be having surgery this Thursday.
The Pan Mass Challenge bike ride benefiting the Jimmy Fund is fast approaching in early August. We are so
touched that our good friend Jim Shine will be riding in honor of Ryan. He has designated his donations to go
to a special neuroblastoma research fund at Dana Farber. It's hard to ask for donations in these tough economic
times, but please keep in mind that neuroblastoma doesn't care about the economy and won't slow it's onslaught
on our children until we can afford to fight back. No amount is too small. To sponsor Jim, follow THIS LINK and enter the name "Jim Shine" which will bring you to the
donations page. Our heartfelt thanks to Jim and all the PMC riders, including Team Eradicate which has had Ryan
as their Pedal Partner for 3 years now.
We'll update again when we have some scan results the end of next week. Ryan is eagerly anticipating his stay at
the Hole in the Wall Gang Camp the first week in August, so NOTHING better get in the way!! Pray, pray, pray for
at least stable scans.......we'll take improved though too.
As always, thank-you for your prayers for Ryan and all our NB warriors and Angel Families.
Love and "100% hope",
Norma and Paul
JUNE 21, 2009
Hi everyone,
Okay, okay, I'm updating!! Sorry for the delay. There really hasn't been much to report, which is always a good
thing.
But first I want to say Happy Father's Day to Paul. The boys and I are blessed to have such a great dad and
husband. God knew we'd need someone extra special to get us through and be our rock. We love you!!
And also honoring all the NB dads we know, both those still lovingly battling beside their warrior and those who
are enduring this day without their precious child.
And now the update.
Ryan completed an uneventful Cycle 3 of the TPI-287 (with temedar the first week) on 6/5. Paul took him for that
3rd treatment of the cycle. They had fun together during their down time, doing some exploring around Burlington
and Lake Champlain and doing...I dunno....guy stuff I guess. Ryan wants dad to take him another time!
After that, we had a week off from treatment and then this past Friday we were in VT for day 1 of Cycle 4. He
continues to tolerate this treatment really well. We got to finally meet the other three kids currently doing
TPI and their terrific parents. The Ronald felt like the Neuroblastoma House for a change. Like Ryan, they've
all been at this a really, really long time, been through more than any child should ever have to endure, and
REALLY, REALLY deserve a break!
Thankfully, Ryan continues to feel great. Just before Cycle 5 he will be scanned again to see where we're at.
That should happen the week of 7/13. Feel free to start praying NOW!
School ended this past week so the boys are officially on summer vacation. WOO-HOOO! We want to thank the entire
Bagnall School community for being so wonderful and supportive to Ryan and our family during this rather
tumultuous school year. A special shout out to Ryan's teacher, Mrs. Regan who went above and beyond in helping
Ryan catch up when he had missed so much school. We're thrilled that she will be teaching 5th grade next year
and Ryan will once again be in her class!!! Can you believe Matthew will be in 6th grade?!?!?!
Ryan's Little League team lost the first game of the play-offs recently which really upset him, along with not
getting a hit all season. But it's hard to be in top form when you missed all but two practices and about half
the games......and your little body doesn't have the strength it should after 5 1/2 years of cancer treatment.
It breaks our hearts to see him try so hard and want so desperately to do well and get that elusive hit. I have
to say his coaches, as usual, were fantastic and always very positive and supportive. Ah, well. There's always
next year???
So Dr. Kramer at Sloan e-mailed us recently inquiring how Ryan was doing with treatment. Nice to know they are
still thinking of him. We're having his latest scans sent to Sloan so they can have a look. They have a new NK
(natural killer) cell study open which Ryan would likely qualify for. She asked if we would be interested. As
far as I know, no one has signed on yet. Right now we're thinking that as along as the TPI is keeping things
stable or improving, we'll stick with that. TPI is a 6-cycle protocol which I believe would bring us to the end
of the summer. Since he's feeling so great on it, and all is going well, we want to give a him some semblance of
a good summer and not slam him with a harsh treatment. The kid hasn't had a carefree childhood summer since he
was 4, and this won't be one either, but as close as we can get in our world. NK would require one cycle of high
dose chemo with parent NK cell infusion followed by 5 days of 3f8. Presumably, he would need his last bag of
stem cells as well. Hospital stays, fevers, blah, blah, blah. Regardless, we have to start thinking about what
comes after TPI and it may very well be the NK cell study. So, please pray that TPI DOES in fact keep things
going in the right direction and that Ryan and Matthew have as much fun this summer as we can squeeze in-between
treatments. Please pray that God will guide us to where we need to be next.
Ryan is SO happy that he has been accepted to attend the Hole in the Wall Gang Camp in Connecticut. He will be
there the first week in August. He had a blast last year, and he's looking forward to going back again. It's a
spectacular camp with a spectacular staff and volunteers. Hopefully, Matthew will also be able to attend the
Sibling Week at the end of August. He too had a blast last year.
Speaking of Hole in the Wall Gang Camp, in May our friend Matt Holcomb completed his Angel Ride benefiting the
Hole in the Wall Gang's Camp in a Suitcase program. Matt exceeded his fundraising goal by raising over $2,000
for this great program. Hats off to Matt and huge thank-you!
Also in May, the Paddling for a Cure moms completed their 2-week, 100+ rapids, 225-mile paddle rafting trip
through the Grand Canyon. They too exceeded their goal by raising over $14,000.00 for Band of Parents. Wow! A
huge congrats and thank-you to Karen and Maryellen.
One last prayer request. It's for a sweet little boy that Ryan was doing 3f8 treatment with way back when.
Jeremy Dickinson has been NED for, I believe, over 3 years now. He successfully beat The Beast, but has been
dealt a cruel blow. The very treatment that helped rid him of NB has caused a pre-leukemia condition called
Myelodysplastic Syndrome. He will need a bone marrow transplant. It's a risk we're all told about, but you just
have no choice really, and you put it out of your mind as you sign those consent forms. If you haven't already,
please consider joining the National Marrow Donor Registry. THIS
LINK explains what's involved, has a FAQ section and separates myths from facts about donation. If Jeremy's
brother or parents aren't a match, they'll have to turn to the Registry.
As always, thank-you for your prayers for Ryan.
Love,
Norma and Paul
MAY 22, 2009
Hi again,
Almost nothing is more stressful than scans. We expect it, gear up for it and endure it. You would think the
people administering the scan would know how anxious and borderline psychotic parents are at this time.
Yesterday morning we went in for Ryan's Spect/CT/MIGB scans. Aside from the MIBG machine acting up and delaying
things a bit, all was uneventful.....until the very end. In walks the tech from behind the glass where his
computer screens show the scan images. His first words to me are "Do you have an appointment with your doctor
today?" "Ummm, no. She's tied up at a conference all day." With Ryan right there I didn't want to question him
as to why he would ask that. NO TECH HAS EVER, IN OVER 5 YEARS, ASKED ME THAT QUESTION AFTER A SCAN. Alarms are
going off in my brain - something's wrong. He then says that he needs us to wait outside in the waiting room
while the radiologist looks at the pictures. He doesn't want to have to hunt us down if they need more pictures.
Also somewhat unusual. Generally, they just say to wait here in the scan room a few minutes so the radiologist
can be sure they have everything they need and don't need anything re-scanned (as when a child moves and the
image blurs). So, with my heart pounding and stomach churning, he takes us back to the waiting area which is a
ridiculously long walk. I'm thinking that in the time it takes us to walk all the way back to the waiting area,
the radiologist could have viewed the images a couple times over so why bother. When Ryan is a few feet away I
casually ask "is there anything of concern?" He says no but still needs us to wait. And wait. Usually it takes
all of 3 or 4 minutes for this quick check. 5 minutes goes by. 10 minutes goes by. My palms are sweaty and I'm
wondering if Ryan can notice my hands shaking. 15 minutes goes by. I'm pacing on increasingly shaky legs,
glancing around to see if there's a paper bag I can breathe into.......or vomit into, whichever. All the while
trying to look nonchalant to Ryan. 20 minutes goes by. The panic is rising exponentially. I'm now scanning every
person that passes by looking for a grim faced white coat heading in my direction. They all keep passing. The
receptionist has an unending line of people checking in for their scans, so I can't get to her. 25 minutes goes
by. If they took an EKG on me right now it would look like a earthquake seismograph. At 30 minutes, nearing
total hysteria and literally on the verge of tears, I catch the eye of the receptionist as she's now leaving for
lunch. "Didn't they take him in yet?" she asks. I explain he's had his scan and why we're still there and could
she PLEEASE call back there and see what's going on. Finally, after what seemed like a very long conversation
(must be a bad sign right?), she comes back and tells me that they told her someone should have come out a long
time ago and told us we could go. HUH????? Some stupid idiot just forgot us??? Believe me, I'll take a false
alarm over bad news any day, but geeeeeez! It was literally another hour or so before I stopped trembling. And
another week before I'll get all these new gray hairs plucked. You "regular" folks are thinking this was an
insane overreaction. NB parents (sadly) get it.
So this morning, after resisting the urge to go down to nuclear medicine and wring someone's neck, I finally got
the ACTUAL results, though technically just preliminary. It looks like he's stable with possible slight
improvement. All the same spots are still there. No new spots. No enlargement of any of the existing spots. It
appears the spots MAY be a bit fainter. Could mean slightly less disease, though we can't say for sure. The best
news is that his bone marrows showed a significant reduction in disease. In April his marrow was petty packed.
They take bilateral samples and now, one side shows 20% disease and the other side shows 5%. Improvement at this
point, no matter how small, is very welcome. He obviously is getting some benefit from the TPI. Today they
added in the Temedar too, with the expectation that they will work synergistically for an even (hopefully)
better response. His next scans will be after Cycle 4. This is the beginning of Cycle 3, so roughly somewhere
around the beginning of July(?) will be his next scans I think.
Thank-you for all your continuing prayers for Ryan.
Love and "100% hope",
Norma and Paul
MAY 20, 2009
Hi all,
First of all, HAPPY 10th BIRTHDAY RYAN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So, remember the movie Groundhog Day? Bill Murray wakes up every morning repeating the same day over and over
again. I wish we could have Groundhog Week and relive the last week over and over again. Our time in Florida was
wonderful but as with all vacations, went by too fast. Discovery Cove and our dolphin experience was just
incredible and surpassed all expectations. We owe a huge thank-you to Peggy P. at SeaWorld/Discovery Cove who
made all our arrangements and made sure we were pampered like royalty. After settling in at our private cabana,
all four of us got to touch and interact with "our" dolphin C.J. and experience an exhilarating ride from him.
Later we went back into the water and CJ's mom, Jenny, delivered a birthday present to Ryan. She swam over with
a buoy in her mouth which Ryan retrieved from her. It said "Happy Birthday Ryan" on it. Way cool. Everything was
soooo relaxing and unrushed. We had the whole day to enjoy snorkeling in the tropical reef, wading in a pool
with stingrays (sans their barbs) who would swim right up to you and let you touch them as they glided by,
swimming around the aptly named Serenity Bay and floating down Wind-away River. Ahhhhhh. All the while feeling
like you were on a lush tropical island with no outside world at all. And no cancer. There aren't many days I
can say that the anxiety of Ryan's disease isn't present, but that was one day it never entered my
consciousness. The stress just fell away like someone was unlocking chains. The cherry on top was Ryan
declaring it "the best day of my life". Priceless!!!
Our package also included passes to Discovery Cove's sister parks, Busch Gardens, SeaWorld, and Aquatica. The
last two we got to enjoy with fellow NB warrior Alina and her family who live in Florida. Alina and Ryan were in
3f8 treatment together at Sloan. It was so great to see them and have so much fun together. We had great
weather all week except for some rain at the very end. Ryan had good energy and held up surprisingly well with
all the walking at Busch Gardens and SeaWorld. He also surprised us by being ALMOST as daring as Matthew and
tried out all but a couple of the huge water slides at Aquatica (with Dad). Matthew did all of them with
Alina's brother who is his age. We made sure we built in a couple of days to just relax at the hotel pool too.
Both Ryan and Matthew spent a lot of time in the pool and Ryan finally mastered swimming - though he still
can't tread water (sinks like a stone!).
Our most heartfelt gratitude to all who made this trip possible. We have many wonderful memories we will all
cherish forever!!
As the saying goes, all good things must come to an end. We no sooner got home yesterday afternoon and Ryan and
I had to turn around and drive to VT this morning(Wednesday) for s-s-s-scans and treatment. And Matthew was
back to school for MCAS testing. Talk about being slammed back to reality!! And to add insult to injury, as I
said, today is Ryan's birthday and he spent it in a car for 3 1/2 hours and having bone marrow biopsies and a
nuclear medicine injection. To soften that blow I brought along a few presents for him to open. That plus a
tasty dinner at Outback, a homemade Harry Potter-themed cake baked by one of the RMH volunteers (thank-you
Vicki), and the day ended on a good note!
Tomorrow is his spect CT/MIBG scan. There's a big neuroblastoma symposium here tomorrow that Dr. Sholler will be
tied up with so I won't get results until Friday. I hope to be able to attend some of the symposium myself. Dr.
Cheung from Sloan is the keynote speaker. Treatment is Friday. This is the cycle they add in the Temedar so
we'll have a loooong day of periodic lab draws. We'll head home Saturday morning but have to be back in VT late
Monday because he has an early day at the hospital on Tuesday for more day-long lab draws. Unfortunately, NB
doesn't take vacations.
Again, thank-you to everyone who helped give Ryan "the best day of my life" and a pretty darn good several days
to follow filled with lots of smiles and care-free fun. And a wonderful, much-needed vacation for all of us.
Please pray that these scans and bone marrows bring good news. Please pray for all our NB warriors and angel
families.
Love and "100% hope",
Norma and Paul
MAY 6, 2009
Hello all,
Ryan's liver function tests came back much better on Monday. His AST went from 127 last week to 54 (high end of
normal is 45) and his ALT went from over 400 last week to 163 (high end of normal is 35). So they are not normal
but back to the usual range when he spikes up and well within the accepted range to do his treatment. They will
be rechecked of course on Thursday when we return to VT, but I can't imagine them spiking up again. But feel
free to say an extra prayer or two!
“A brother is a friend God gave you; a friend is a brother your heart chose for you.” Proverb
Ryan has been blessed with a wonderful brother and some truly special friends. None more special and
extraordinary than his buddy Duncan. Knowing how much Ryan had talked about his dream of swimming with dolphins,
and knowing that he had already had his Make-A-Wish, Duncan and his equally extraordinary mom Kathy managed to
arrange for our family to have a day at Discovery Cove in Orlando, FL where Ryan will indeed swim with dolphins.
In the midst of all our trials and tribulations, we are humbled and astounded at the lengths our dear
friends went to to help Ryan realize his dream. To see the look on Ryan's face when he found out was priceless.
To see Duncan bursting with excitement telling him about it was priceless too. So, we leave on May 12th to
squeak this in between treatments in VT. I think if Ryan had said he wanted a ride on the Space Shuttle, they'd
have figured out a way to make it happen! Their selfless and unwavering support, love and kindness during these
past 5+ years has truly been a blessing. The phrase "we don't know what we'd do without you" never rang more
true. We love you guys!
Unfortunately, we also have some very sad news. We were devastated to learn on Monday that our little friend
Jack Brown earned his angel wings over the weekend. He is forever free of the beast that dogged him for 4 long
years. He fought valiantly and his devoted parents left no stone unturned in trying to save their son. Please
pray for his parents Yvonne and Richard and his siblings Connor and Rhian. They have always been very
supportive of other families and were instrumental in the formation of Band of Parents and have always done as
much as they could to raise money and awareness for NB to help save families from this anguish. http://www.jackbrownappeal.org/updatesonjack.asp
As I've said before, we do not tell Ryan when one of our NB friends passes away. We will tell him and
Matthew, who also knew Jack and his brother and sister, that the family was homesick and decided to continue
treatment back in England. Please do no make mention of it to them either in person or in the
guestbook.
As we mourn the loss of another precious child and I dust off my soapbox, consider this, which I copied from
another site. The Swine Flu A Crisis???
It's all over the news. The Swine Flu has entered the U.S., and everyone is responding quickly. Here is what has
happened already:
--Over 100 schools have closed.
--President Obama called on all schools with possible swine flu cases to "strongly consider temporarily
closing."
--Congress approved $1.5 billion in emergency funds.
--Education Secretary Arne Duncan said that everyone involved in schools needs to "pitch in and do our part to
prevent the spread of this flu virus."
--The Department of Education and the CDC have held conferences to give updates and advice for handling the
crisis.
--WHO Director-General Margaret Chan has raised the alert level to phase 4.
--Shipments of the drug Tamiflu from the federal stockpile, enough to treat 11 million patients, have been
distributed to several states.
--Dr. Jesse Goodman, of the Food and Drug Administration's swine flu work said,"We're working together at 100
miles an hour."
--Congress has asked Homeland to consider closing the Mexican border.
Here are the numbers: There have been 84 documented cases in the U.S. There has been one death, a two year old
boy with underlying health issues.
Updates on the Swine Flu epidemic are all over the papers, T.V., Internet, and radio. You can't avoid it.
This is a crisis and deserves a fast response. Sick children, and the death of even one child, is a great loss.
But I am a little confused. I would like to point out some comparisons.
1) Since the outbreak in the U.S., there have been 84 cases of swine flu, and one death. Compare that to the
fact that 12,600 families are told their child has cancer each year. That is 35 families every single day of
the year.
2) The media tells us that the 84 cases and one death from the swine flu is a "crisis" and "epidemic". But do a
google search on childhood cancer, and you will find the media consistently refers to childhood cancer, with
40,000 current cases and 2,500 annual deaths, as "very rare".
3) To protect yourself against the swine flu, you should wash hands, not touch your nose, and cover your mouth.
You can even wear gloves and a mask. But there is no protection against childhood cancers. In fact, the cause of
most childhood cancers is still unknown.
4) The swine flu produces severe flu symptoms. The effects of cancer are beyond description. So just consider
this: Cancer is part of the body, so the treatment is a process of poisoning the child to the brink of death,
then pulling back hoping they stabilize, then hitting them again. Over and over and over. Maybe a year, maybe 7
years. The resulting organ failures often cause more complications and deaths than the cancer itself. And then
you wait and pray that it all worked. "Remission" only means they think they got. "Relapse" means they were
wrong.
5) The government has opened up it's stockpile of flu drugs to fight the crisis. But there is no stockpile of
cancer drugs. In fact, it has been 30 years since a new pediatric cancer drug has been developed. A 5 year study
by the National Institute of Health concluded that new drugs for pediatric and adolescent cancers are not being
developed because the profit margins are too slim. Therefore mega-doses of adult chemotherapy are administered
to children, using a medical assembly line system called protocols. The great need for individualized care is
ignored because it is not economically sustainable.
6) Congress has approved $1.5 billion in ADDITIONAL funding to fight the swine flu. With 84 infected people,
that is $18 million per person. Childhood cancer received a TOTAL of $30 million. That works out to $750 for
each child currently fighting cancer.
So does any of this scare you more than the swine flu? It should. The emergency response to the swine flu had be
great. But where is the emergency plan for childhood cancer? And where is the media attention? There is
none.
Some might say these are not a fair comparisons. Well, in one way they would be correct. The $1.5 million for
the flu has been paid. The $30 million for childhood cancer was approved, but has never funded. Other issues of
greater crisis keep taking priority, such as $120 million to distribute free condoms in 3rd world countries
(Yes, really. It's in the stimulus package).
Some might still say my comparisons are still unfair, that I am not comparing apples to apples. But, just for
the record, the U.S. apple growers got $170 million in the stimulus package.
Honestly, I am not criticizing the response to the Swine Flu. It is an appropriate response. I just do not
understand why our children with cancer deserve less.
Please remember:
1 in 300 children will be diagnosed with cancer before the age of 20.
12,600 children are diagnosed each year.
3,000 will die of cancer each year.
Cancer is the #1 disease killer of children ages 1-19.
The cause of most childhood cancers is still unknown.
Only 3% of cancer research money goes toward childhood cancers.
There are currently 30,000-40,000 children fighting cancer in the U.S.
The number of children diagnosed with cancer has increased every year for the past 25 years.
Teenagers and young adults (ages 15-22) are the only age group that have flat or declining survival rates from
cancer.
In the past 35 years ONLY ONE new cancer drug has been approved for pediatric use.
Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult
cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of
secondary cancers.
For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high
dose chemotherapy treatments.
Teenagers have the highest cancer fatality rate of any age group under 80. Their cancers tend to be much more
rare, therefore lacking established treatments. Their cancers also tend to be far more advanced when diagnosed.
A 5-year study at Children's Hospital Pittsburgh of UPMC recently concluded that teenage cancer survivorship is
lower due in part to a lack of access to clinical trials. They concluded: "Patients who are enrolled in clinical
trials offering the most advanced cancer treatments do better than patients who receive conventional treatment.
Adolescents and young adults with cancer are less likely than younger children to be enrolled in clinical
trials." I copied this entry off of the PAC2 Website www.curechildhoodcancer.ning.com
As always, thank-you so much for your prayers for Ryan and all our NB warriors and angel families.
Love and "100% hope",
Norma and Paul
MAY 2, 2009
Hi everyone,
Well this has been a crappy week on multiple levels, the details of which I won't bore you with, except for the
last two MOST crappy things.
First, we came home from VT early - for two reasons. One: Ryan did not receive his treatment Friday
morning as planned. His liver function numbers were waaaaay out of whack. The TPI can cause liver enzymes to
rise and they have risen in the past, but only slightly and then they come back down. Yesterday his numbers were
over 11x the norm. No one was expecting that! We will monitor his labs at home this week and are scheduled to
go back to VT again this coming Thursday where they will run them again. The doctor seems pretty confident that
they will be back down by then. Ryan also had a bit of a viral bug earlier this week so it could have been
caused by that too instead of the TPI. Plus, he had one dose of Tylenol on Wednesday and Tylenol can sometimes
raise the LFTs - or maybe the combination of all of the above did it, BUT they have no way of knowing that and
just have to assume it's the TPI. So we're a little freaked out and pretty disappointed. Missed treatments are
always un-nerving. The good thing was I cleared up our concerns about Ryan's scans with the doctor and we're
okay with it.
"There are two means of refuge from the miseries of life: music and cats." - Albert Schweitzer
So, with our treatment day aborted, it gave us the opportunity to race back home on Friday afternoon in time for
the 2nd Most Crappy Thing - to say good-bye to our sweet, beloved cat Hoss. Now no one needs to tell us how to
put into perspective the loss of a pet versus the human tragedy we see all the time. But it was still very
emotional as the boys have literally grown up with our two cats whom Paul and I hand raised from newborns
(dumpster rescue almost 12 years ago). We went to the vet's and each of us got to hold Hoss and say our
good-bye's. Very hard. He had been sick the past few weeks and we knew he was failing fast. He passed away
peacefully last night. I'm sure you've heard of therapy dogs and cats who visit hospitals and nursing homes to
cheer up patients. Trust me when I say these cats have saved us a fortune in psychiatric bills. There is nothing
more soothing and calming as a purring cat curled up on you. They listen without interrupting, judging or
advising (or charging). Hoss and I had many late night therapy sessions - his hours were always very flexible.
And all you have to do for them to love you back is feed them, clean the litter box and surrender the best spot
on the bed. The boys are pretty sad, but doing okay.
As usual, there are many, many kids we know battling relapse who are in great need of prayers. Too many to list.
Please pray for all our NB warriors. Please pray Ryan can have his treatment next week too.
Thank-you.
Love and "100% hope",
Norma and Paul
APRIL 29, 2009
Hi everyone,
Sorry for the delay in updating on Ryan's scans from last week. I've been trying to get a hold of Dr. Sholler to
discuss some concerns we have BUT as far as they are concerned the word is "stable". Given that the last two
scans in March both showed progression, stable is just fine with us. We feel we at least have our fingers in the
multiple holes in the dam finally. So what's our concern?? We have an admittedly strict definition of the word
"stable": absolutely, positively no detectable increase in disease, anywhere. PERIOD. So I'm glancing over the
(preliminary) written reports and on the MIBG scan with Spect CT it mentions mild additional activity on the
right side of the L5 vertebral body whereas in March it was only noted on the left side but called this a "minor
change". Any "minor change" in the wrong direction is major to us. Progression is progression but I'm starting
to think they have a sub-category of stable that goes something like "stable enough at this stage of the game
lady so quit complaining already". At any rate, I've been unsuccessful in getting to talk to Dr. Sholler about
this and am VERY frustrated by it. The purpose for doing this scan was to check for progression because if
there was progression, they would have fast-forwarded to Cycle 3 which adds in the other chemo temedar. That
didn't happen.
Please keep our little friend Jack Brown in your prayers. He is the other boy that started the TPI the same week
as Ryan. His scans unfortunately did not bring good news. He is off the study and doing other chemo. Jack Brown
We took Ryan to a healing service 2 Sundays ago. It was very long but very moving and I'm glad we went. There
were two other children there, one with a brain tumor and one with a seizure disorder. The priest at one point
asked everyone there to pray for these children. Many came up to me (and the other parents) and asked for the
kids' names, promising to pray for them. So Ryan's army of prayer warriors has increased again!!
In other news........
Here's an easy and FREE way to help kids receive a Make-A-Wish!!
As part of its $250,000 donation to the Make-A-Wish Foundation®, Betty Crocker® is granting 12 Wishes in 12
Weeks to Make-A-Wish® children. You can help Betty share the power of a wish® by supporting your favorite
Make-A-Wish® chapter. Vote for the Make-A-Wish chapter you would like to receive a wish to grant to a
Make-A-Wish kid. Just go to stirringupwishes then
click on "Support a Chapter Now". It’s a sweet way to make a child’s dream come true. Share the power of a
wish® You may vote once per day. At the end of our promotion the four chapters with the most votes in each
category will be granted a wish. The Boston chapter is lagging behind.......
And
Ever wonder what lengths an NB parent will go to to raise money for research. Extraordinary lengths apparently!
Check this out paddling for a cure. In May, two women,
one an NB mom, will paddle raft the entire length of the Grand Canyon over two weeks time. They'll sleep on the
shore of the Colorado river at night and raft it by day. They'll cross more than 100 rapids, including the
wildest navigable river water in all of North America. They're calling this adventure "PADDLING FOR A CURE!" and
they're doing it to fund the development of a new treatment for Neuroblastoma. Proceeds will go to Band of
Parents. If you should choose to donate, you can state in the comments area "in honor of Ryan Reardon".
Well, that's it for now. We leave for VT tomorrow for his next treatment.
As always thank-you for your prayers for Ryan.
Love and "100% hope",
Norma and Paul
APRIL 22, 2009
Hi everyone,
Just a very quick note. We are leaving for VT Wednesday morning. Ryan will have an MIBG/CT scan on
Thursday to see where we're at. He's only had 1 3-week cycle of TPI so we really can't expect too, too much.
We'll settle for stable, but a little improvement would be a welcome surprise. PLEEEASE say and extra
prayer or two. He should start his next cycle of TPI on Friday.
Aside from a little cough/fever bug the last couple of days, Ryan has been feeling fine.
I'll update at the end of the week when we have results.
Love and "100% hope",
Norma and Paul
MARCH 28, 2009
Hi everyone,
We're back home from Vermont. I wanted to update sooner, but Ryan's schedule was changed/delayed and we were the
last to know. We arrived in Vermont on Monday but ended up cooling our heals for a couple of days since no one
called us to say the schedule had been changed. We didn't have a single appt. until late Wednesday. ALL his
scans and bone marrows were done on Thursday. Treatment Friday. I finally got the results at the end of the day
on Friday.
So once again we're in a good news/bad news scenario. Keep in mind that Ryan's progression was discovered early
in March. He's gone a full month with no treatment whatsoever. The potential for A LOT of progression was very
real. We've seen NB take off like wildfire so we were very nervous. The good news is that it did not take off
like wildfire. The bad news is that there is some progression again. It is now back in his bone marrow - both
sites positive for disease. Dr. Sholler is calling the rest of it "stable" although I think some of the spots,
particularly the rib tumor(s) look bigger to me. Here again, we're comparing scans done on different machines so
we can't say for sure. It's sort of moot at this point anyway. We're pretty much back to where we were in
October when he first relapsed - maybe a bit worse. She said she would contact Dr. LaQuaglia at Sloan who did
Ryan's other rib surgery to see if he thinks surgery is an option. She said he likes to see some response from
chemo first though, it might have to wait. He will be back in school on Monday and we will do labs on Wednesday.
Like the ABT-751 it should not hit his counts much, but I just want to check anyway. REMINDER: RYAN DOES
NOT KNOW ABOUT ANY PROGRESSION!!
Now on to the treatment. It was pretty easy and uneventful. The hardest part was having to wake him up at 3 a.m.
the night before to give him a steroid that had to be given at precise times prior to treatment. The TPI
infusion lasted about an hour but we had to hang around the rest of the day so they could do blood draws certain
hourly intervals. That was it. We drive back next Thursday and have his 2nd dose on Friday. Home on Saturday
again. Then the same the following week with one week off after that. Scan again before the 2nd 3 week cycle.
With the 3rd cycle they add in Temedar, another chemo he's had before. So far he's had no side effects at all.
And I have to say that all of the staff at the hospital were wonderful. Very, very nice.
Ryan and I had a pleasant drive to Vermont on last Monday. The Ronald there is quite nice. Like Boston's, it's a
BIG house. Our room was smallish and we had to share a bathroom, but who cares. There is always someone dropping
off dinners and goodies, so that cut down on some of our expenses. Ryan and I both gave up chocolate for Lent.
I swear there was a new plate of either brownies or chocolate chip cookies (or both) every day. *sigh*
Ryan ran into his old buddy Jack Brown who we know from Sloan. Jack is doing the same TPI-287. In fact he was
the first patient on this study and Ryan was the second. It was nice for both of us to have familiar faces
around. Please pray for these two little trailblazers! They have both had a very long and difficult road.
Miscellaneous:
On a lighter note, I got a call from Paul the other night saying Ryan's Little League coach had called to say
that Ryan is on the Orioles this year. When I told Ryan he said "Wow, I was hoping I'd be on the Orioles, and it
happened. Lately, everything I wish for happens." Then he went on to say that he wouldn't wish for a million
dollars. That would not be responsible. "I should use my powers responsibly". :-)
AND
Here's an innovative and easy (and free) way to help find a cure for neuroblastoma........
IBM World Community Grid to Search for Cure for Childhood Cancer (from 3/17/09 Wall Street Journal)
IBM and researchers from the Chiba Cancer Center Research Institute and Chiba University in Japan are launching
a new World Community Grid project to discover a drug treatment for neuroblastoma, the most common cause of
death in children with solid tumors.
...The new Help Fight Childhood Cancer project uses the idle computational power from volunteers' computers to
identify which of the three million potential drug candidates prohibit growth of three proteins believed to be
key in the progression of the cancer.
...To become of member of World Community Grid and donate unused computer time, individuals register on
www.worldcommunitygrid.org and install a free, small, secure software program onto their computers. When
computers are idle, data is requested from World Community Grid's server. These computers then perform the
computations, and send the results back to the server, prompting it for a new piece of work. A screen saver will
tell individuals when their computers are being used.
There are different projects so be sure to select Help Fight Childhood Cancer. Apparently there is an IBM
commercial running now on TV about it and here's the rest of the
ARTICLE from the Wall Street Journal: I'm as nervous about computer viruses as anybody -
having just recovered from one - but so far none of the families I know who have done this have experienced any
such problems with their computers.
Love and "100% hope",
Norma and Paul
P.S. Yes, we did make it to the Ben & Jerry's factory on our way home today. Cherry Garcia was the free
flavor sample! Yum!
MARCH 19, 2009
Hi Everyone,
We have a plan. In was an incredibly stressful, bumpy road getting there, but in the end the planets seemed to
align. The recommendation we got from NY was standard dose cytoxin/topotecan. Boston also presented us with a
couple of possibilities but could not say "this one" is best. We were incredibly frustrated by this "paper or
plastic" shrug we'd get from Boston. We just want someone with "MD" after their name to say "this is what you
need to do." The truth is that there simply is no good choice........or even slightly better choice for that
matter. Everything at this point is a shot in the dark. Pick one out of a hat and cross your fingers and toes.
So, after MUCH anguish we decided to go with a phase 1 study using IV cytoxin, oral cytoxin and later adding in
zometa and avastin. All in Boston. We should have started this past Tuesday but had to delay because of another
appointment. Tuesday I found out that Wednesday was a no go because neither the NB doctor nor the two nurse
practitioners would be in Wednesday. I was NOT happy. All you NB parents out there know how freaked out we all
get at delays in treatment. Okay, now we're planning on Thursday. Then, late on Tuesday, out of the blue, an
e-mail from Vermont arrives. The TPI study is opening next week, are we still interested? (needle scraping
across record) Fired off an e-mail saying yes, we're still interested but wanted to know if his progression
(which they didn't know about yet) affected his eligibility. We also had other questions and asked if Dr.
Sholler could call us. Waited ALL DAY Wednesday. Nothing. Maybe all NB doctors have Wednesdays off?? The
Stress-O-Meter is smoking - - you should see my Linda Blair impersonation. Wednesday evening we send an e-mail
to the nurse practitioner at Dana Farber saying we'd like to post-pone till Monday (gotta keep our options
open). Thursday morning the long awaited call from Vermont comes and Dr. Sholler answers all our questions to
our satisfaction so we are "GO" for TPI-287 next week in Vermont. So maybe there was some divine intervention
at work here. Had we started the cytoxin on schedule, we would have had to wait a minimum of 3 weeks to start
the TPI because you have to be off treatment for that long to start the new study. Everything for a reason?? I
would have appreciated the intervention about a week sooner, but......
I really can't adequately put into words the fear, anxiety and stress we've felt since Ryan's last scans. Not
only do we have these HUGE life and death decisions to deal with, we still have to go about the regular daily
stuff of life. Kids to school, Paul to work, cat to the vet, groceries, karate, homework, computer virus (thanks
for the fix Andrew!), etc. It seems like everything else should just stop and get of the way so we can focus
all our energy on THIS, because it certainly consumes all our energy - and a fair amount of our sanity too.
But, though Paul and I have aged about a gazillion years in the last week, Ryan continues for feel just fine,
thank-you very much. We are enormously grateful for that. He had his baseball try-outs yesterday and is looking
forward to Little League. And he got a GREAT report card, as did Matthew.
It feels weird heading off to yet another unfamiliar hospital and doctor. From the concrete jungle of NY to
bucolic Vermont. Wow. I hear the Ben & Jerry's factory isn't too far. :-)
We pray we've made the right decision. Time will tell. Needless to say, Ryan needs LOTS and LOTS of prayers.
Keep them going strong!
With love and "100% hope",
Norma and Paul
P.S.
On Memorial Day weekend, May 23 and 24, our friend Matt will be riding in the Angel Ride for the second time.
The Angel Ride is sponsored by the Hole in the Wall Gang Camp. What makes this charity different is that 100%
of the money raised by the riders goes to "Camp in a Suitcase," the Hole in the Wall Gang's hospital outreach
program that takes the magic of camp to the bedside of children hospitalized with serious illnesses. Ryan has
not only attended Hole in the Wall Gang Camp, but also participated in Camp in a Suitcase as well. He loves
them both!
I know everyone is tightening the pursestrings these days, but if you are able and would like to sponsor Matt,
click on the LINK and click on “Sponsor A Team
Participant” then click “Angel Ride 2009” and type Matthew Holcomb in the name space then donate away.
THANKS FOR RIDING MATT!!!!
MARCH 12, 2009
Hi everyone,
I’ve been putting off this update until we had more information. We were devastated to learn on Saturday that
Ryan’s disease has progressed. The ABT-751 is not working. That’s the bad news. The good news is that it doesn’t
appear to be as extensive as we first feared. There are new spots on his arm and hip plus the area on the rib
that’s been lighting up since October is now larger (only by millimeters though) and appears to be several small
tumors coming out of the rib. This is the area of his surgery in February of last year and when it lit up in
the past there was always indecision about whether it was actually disease or just scar tissue absorbing the
tracer. Now we know.
We had to wait until his CT on Monday to determine if the "diffuse uptake" in his liver on the MIBG was disease
or not. It was a huge relief to learn that it was nothing. And of course we were also waiting on the bone
marrows. Thankfully, they're negative for disease.
So where do we go from here?? Good question. Our options are very, very few. Certainly nothing that we can hope
to actually reduce disease. Our goal is to halt any further progression and keep this stable until other trials
open up. NY is recommending standard dose cytoxin and topotecan, both of which he’s had many times before -
again with the goal of just keeping things in check. The NK cell trial isn’t open yet but “moving along” and
will hopefully open soon. That will potentially be our last hurrah as it would likely use up his last bag of
stem cells and thus eliminate any ability to do further aggressive treatment. We’ve inquired about trying to
harvest more stem cells and naturally were told it was very, very, very unlikely he’d have any to harvest plus
there’s concern about the quality of any that might be there. But we’re going to push for it anyway. Others
have been told it was futile and ended up with a good harvest.
When we sat down with his doctor in Boston on Monday, she mentioned a couple of options but we haven't yet
gotten an official recommendation.
The VT trial also is not open yet either, though I’m not sure if he’d still qualify with progression.
IMPORTANT: TO THOSE OF YOU WHO HAVE CONTACT WITH THE BOYS, WE HAVE DECIDED TO NOT TELL RYAN AND MATTHEW THAT
THE SCANS ARE WORSE. WE’RE JUST GOING TO SAY THAT THE ABT ISN’T MAKING IT BETTER SO WE’RE SWITCHING TO SOMETHING
ELSE. As always, keep any conversations positive!!!!
We’re becoming very adept at skirting the truth without actually lieing. Gotta keep Ryan “the most hopeful
person on the planet”.
The best news out of all of this is that Ryan is still feeling just fine. Absolutely no symptoms at all. Which
makes the “skirting” thing much easier.
So, once again, please pray for guidance for us as we decide what’s next. And most importantly, whatever
treatment we go with, that it keeps him stable. AND that the NK cell trial gets off the launch pad and is THE
THING that will be the knock out punch we need. Anyone who feels up to taking on the 54 day Rosary Novena again,
feel free!!
We’ve been paddling upstream non-stop for five long years. We started with two good oars. Now we feel like we’re
paddling frantically with nothing but a soup spoon. But we WILL get there.
PRAY, PRAY, PRAY!!
Love,
Norma and Paul
P.S.
On a completely different note, on Memorial Day weekend, May 23 & 24th, our friend Matt will be riding in
the Angel Ride for the second time. The Angel Ride is sponsored by the Hole in the Wall Gang Camp. What makes
this charity different is that 100% of the money raised by the riders goes to “Camp in a Suitcase,” the Hole in
the Wall Gang’s hospital outreach program that takes the magic of camp to the bedside of children hospitalized
with serious illnesses. Ryan has not only attended Hole in the Wall Gang Camp, but also participated in Camp in
a Suitcase as well. He loves them both!
I know everyone is tightening the pursestrings these days, but if you are able and would like to sponsor Matt,
click on the link Sponsor Matt! and click
on “Sponsor A Team Participant” then click “Angel Ride 2009” and type Matthew Holcomb in the name space then
donate away.
THANKS FOR RIDING MATT!!!
FEBRUARY 20, 2009
Hi everyone,
Once again, I'm happy to report that Ryan is doing quite well and feeling great. We were able to take in the
Eagle Festival on Valentine's Day. However, we did not get our wish for an unseasonably warm day and DID freeze
our buns off, but got to see bald eagles in the wild. Well worth it. The boys have been enjoying school vacation
week and hanging out with their friends.
This past Tuesday the 17th Ryan started his 4th round of ABT-751. They do a work-up after every 2 rounds so scan
week will fall on the week of March 2nd in Boston. This time we're adding a brain/spine MRI which hadn't been
done since December in NY, so he is due. And, aside from the MRIs, this time we'll be comparing scans done on
the same machine so we'll get a better sense of where he's really at.
We spoke again with Dr. Sholler in VT a couple of weeks ago. We are apprehensive about the side effects of
Nifurtimox so I asked what else she had to offer. There is a new trial opening up (hopefully) in March which she
feels Ryan would be a good candidate for. It's called TPI 287. They've had VERY encouraging results in the lab
with it. It's already used in some adult cancers with good response. It is supposedly 400x more effective than
vincristine (one of the up front chemos Ryan had back in 2004). The first two cycles are done with the TPI alone
and then 2 cycles with Temedar. Ryan's cancer has proven to be very resistant to chemo. If I understood her
correctly, one reason kids like Ryan become resistant to chemo agents is because they apparently have something
in their bodies (I forget what she called it ) that cause the body to flush out the chemo before it can work.
TPI does not get eliminated by the body by these resistance pathways. In other words, I guess it hangs around
long enough to do its thing. This was one aspect that made it sound so good for Ryan's situation. It's
administered outpatient. We would need to be in VT for 2 weeks, maybe longer the first time since they'll want
to do their own scans, then 2 weeks off, etc. I told her we did not want to get into any situation where we
might need to use his last bag of stem cells and she assured me that wouldn't happen with this stuff. BUT, it's
a new Phase 1 trial and I'm still waiting to hear if they got the final approval for it. They had 2 out of the
3 needed and were supposed to find out about the 3rd this past week. No news yet though. As for NY,
they reviewed his last scans that Boston sent to them and Dr. Kramer e-mailed saying she thought they were
"mostly" stable, but did not offer any treatment options. Their NK cell trial is still 2-3 months away which in
reality translates to many more months I'm sure.
So, the milestone anniversary has come and gone. Five years from diagnosis. The 5-year survival rate for High
Risk Stage IV NB kids is only around 20-25%. Bumpy a road as it has been, Ryan has indeed already beaten the
odds just by the mere fact that he is still here. And we believe The Amazing Super Ryan will continue to BEAT
THE CRAP out those stinkin' odds too!! :-)
Ryan Moments: A few weeks ago when we were getting his scans done in Boston, we got to nuclear medicine
for his MIBG injection which is the radioactive stuff they inject the day before the scan. To protect his
thyroid, we always have to give him these drops - SSKI drops - for 3 days starting the day before the injection.
So, a nurse came out to the waiting room to greet us and asks "has he been taking his SSKI?" Would you believe
that everyone had forgotten about the SSKI??? I don't remember ever getting a script from the dr. or nurse
practitioner and stupid me never even thought of it. I mean really, how many times have I done this??? How on
earth I could have forgotten is beyond me. Well, needless to say there were some tense moments as the nurse
informs me she'll go talk to the radiologist and see but didn't hold out much hope. No drops means no injection
which means no scan. Now I'm kicking myself and imagining having to reschedule to the following week and prolong
the agony some more. I was FUMING. Finally the nurse came back and said they'll give him a double dose of SSKI
right now and go ahead with the injection. Whew!! I think if she had said no, we'll do it next week I would have
dissolved into tears right there. Now the cute part of the story. After she left, Ryan came up to me and said
that when I had gotten SO upset, he prayed to God that everything would be okay and work out. And it DID. He
said he also prayed that this guy at the desk in nuclear medicine that we really liked way back in 2004 when we
used to come all the time would still be there. His name plate was there but he wasn't sitting there at first.
After Ryan said his prayer, the guy came back from lunch (at 3:20), looked up and recognized Ryan even though he
hadn't seen him in years. I should give Ryan my list since he seems to have the direct line to The Big Guy!!!!
:-)
THEN, about a week ago, we were sitting watching TV and out of the blue, Ryan said he wanted to talk to me - in
private (Matthew was sitting there with us). So we went into the playroom and he said: "You know how stuff's
been happing lately when I pray?" I said "yes". He then said, "I think it's because I have 100% hope. I'm the
most hopeful person on the planet!" (arms up gesturing for emphasis) Can you believe this kid??? Have I
mentioned lately how AMAZING he is??? BTW, even though did take me aside to tell me this in private, it was
just too incredible not to share. So I will ask that you not mention it to Ryan so that I don't get into
trouble!!! And as usual, a few prayer requests. Please keep the families of Harrison Nichols and Eden
Brunskow in your prayers. This week will mark one year since Harrison and Eden passed away. Also the family of
Jessica Rose Kohut who passed away about 2 weeks ago. She received a platelet transfusion but the platelets
were contaminated with bacteria. In her immune-suppressed state, it caused catastrophic damage to her heart
among other things. Though she had been showing improvement, she died several days later after suffering a
stroke.
As always, thank-you for your prayers for Ryan. Feel free to ramp it up as the first week in March and those
scans approach. And please pray that this new trial opens up. We need something new SOON!!!!!
Love,
Norma
P.S.
And on a much lighter note........Red Sox players are in Ft. Meyers!!! There is a light at the end of this
bitterly cold/snowy tunnel after all. Varitek is signed (much to Ryan's relief), and Red Sox Nation is awakening
from a long winter's nap. Ahhhhhh!
JANUARY 28, 2009
Hi everyone,
Sorry for the delay in updating on Ryan's work-up results. Some of it is subject to interpretation and we were
waiting for the Tumor Board in Boston to meet on Tuesday afternoon to get a consensus. First of all the good
news is that there is no new disease noted and the bone marrow aspirates and biopsies are negative! The part
that was harder to interpret was the MIBG scan. It showed all the same spots as before but the spots are
brighter - greater avidity to use their term. No one can say for absolute certain if this is because there has
been intensification of the disease in these spots or if it is just a function of the fact that these scans
were done on a different machine. The December ones done in NY and these here in Boston. They feel now that it
is quite reasonable to assume that it's just the different machine and are considering his disease "stable".
Stable is good, what we were told to expect, and we are happy with it. Okay, not thrilled to pieces, but happy.
You always secretly hope for the that unexpected slam dunk, but we are grateful nonetheless. We've asked for
all results to be sent to NY for their input as well as to Dr. Sholler in VT. No stone unturned.......
Ryan is still feeling great and aside from 3 days spent in Boston last week, he's been going to school
regularly. He's even taken up Spanish as well as guitar lessons, both being offered at the school once a week.
AND he is plowing his way thru the last Harry Potter book. So, these past several weeks have been about as
close to a normal life for Ryan as we can expect or hope for. It's been good and if they could guarantee that
the ABT751 would keep him stable forever, we'd stay on it forever. However, we know we can't expect that to
last for long so as I mentioned above, we're actively searching for the next treatment that will get him back
to remission. His body has indeed rested and recovered (as much as it can) from the high dose chemo hell he
went thru in the Fall. Even though the ABT isn't supposed to affect counts at all, this is Ryan so of course it
does somewhat. All he has to do is come within 5 feet of chemo and his counts drop, never mind infuse or ingest
it!!
I was glancing back at our updates from January of last year. Then Ryan was recovering from chemo and preparing
for his rib surgery which would happen in early February. This will be the first February in 2 years that no
surgery is scheduled (2/2007 was the brain surgery and last year the rib). This February instead we are planning
to attend the Eagle Festival on Valentine's Day sponsored by the Mass. Audubon Society. We're very close to the
Merrimack River which apparently is a favorite nesting spot and hang-out for bald eagles. Hopefully it will be
an unusually warm day and we'll get to spot lots of bald eagles without freezing our buns off.
The other good news is that Matthew's Black Belt Spectacular FINALLY happened this past Saturday after having
been delayed several times since November. And our young man was indeed SPECTACULAR. He performed really well
and we are very proud of him. And don't nobody MESS with him either!! Ha-ha.
So, we will wait to hear from NY and VT and see what our options are. Once again, please pray for guidance for
us as we sift thru whatever information we gather.
Also, please keep some of our friends in your prayers.
Nick Franca who just got hit with bad scan results.
And Jack Brown who had been doing SO well but has
also had a significant relapse.
And Jack Bartosz who is suffering greatly with pain
from mouth sores.
As always, thank-you for your prayers for Ryan.
Love,
Norma and Paul
JANUARY 13, 2009
Hi everyone,
Ryan continues to feel great and go to school. Just yesterday he finished his second round of ABT751. Counts
took a slight hit but again, nothing major. Next week Ryan will have a work-up done here in Boston. Bone
marrows on Tuesday. Wednesday will be CT and MIBG scans. The anxiety level is off the charts. These are of
course his first scans after starting the ABT. We know we can't expect too much. Stable disease would be a
victory, improvement a small miracle. Progression always a possibility. So, needless to say, we need LOTS of
prayers for Ryan - and us so that we don't come unhinged between now and then. We go through phases of really
believing Ryan will be that miracle kid who beats the odds. And then times when we feel the bite of the reality
that each set of scans could be the one where they tell us to just take him home. With 3 relapses under his
belt, that possibility looms larger and larger. It's not how we want to think, but we've seen it so, so many
times before. It's hard to stay positive when science and medicine seem to say what we don't want to hear. But
we believe that God has the final say and that all things are possible through Him.
But it is indeed hard to stay positive when we have a week like last week. Three new angels and two
relapses.
We lost our friend Devin Reid (www.caringbridge.org/visit/devinreid). He was the young man Ryan had made friends
with at the Ronald in NY and that I had mentioned in the Fall as having been sent home with no options. He
rallied while at home and was doing so well that Sloan asked him to come back to NY to try one last thing.
Something to do with T cells his sister had donated last Spring. We had a chance to see him again in early
December which was so nice. The treatment itself appeared to be working. In the cruelest twist of fate
imaginable, it was an infection the took his life. Please pray for his family. I hope this link still works.
It's an article about Devinin
his local paper and VERY much worth reading.
Also, Coleman Scott Larson (age 5) became an angel last week (www.carepages.com and his page is "ColemanScott").
Please keep his family in your prayers as well, especially his twin brother Caden.
And the family of NB Angel Dante (www.carepages.com - page name: "TrooperDante").
Please also pray for two NB kids who have relapsed. Maya Hathaway (www.caringbridge.org/visit/mayahathaway) and
Madisyn Benoit (www.caringbridge.org/visit/madisynbenoit).
When I ask you to read these sites, it's not because I think it's fun. I know it's hard to read about another's
pain and loss. But there is something intrinsically valuable in the insights gained. Everyone has something to
learn about LIFE and LIVING from these courageous children and their parents.
I guess this update turned into much more of a "downer" than I intended. But, this is our little corner of the
world. It is what it is.
I also want to remind everyone that we do not tell Ryan everything that goes into these updates. He is on a
"need to know" basis!! I know some parents have allowed their children to read the updates. That is certainly
your decision to make and we respect that. BUT, I would request that you consider either screening the update
first to decide if it's appropriate for a child to read OR at a minimum, and if your child is a
friend/classmate of Ryan's, to be sure your child knows that none of this is to be discussed with Ryan. It is
our choice to shield him from the harsher realities that may frighten him or cause him emotional pain. Please
also keep that in mind when signing his guestbook as he does enjoy reading that. KEEP IT POSITIVE!!! We thank
you very much for your understanding.
And as always, our heartfelt thanks for all your prayers for Ryan. Keep 'em coming!
Love,
Norma and Paul
P.S. I just wanted to let everyone know there have been some BoP Shop updates including new designs, new
products and an advocacy section and more to come. Please check it out and visit The SHOP .
DECEMBER 30, 2008
Hi everyone,
We haven't updated in a while, but no news has been good news. Ryan has been feeling great and doing
well.
The boys had a great Christmas and Santa was VERY good to them. There were many Santas, Secret Santas and busy
elves who were hard at work - God Bless you ALL. It was wonderful to be all together and HOME.
The holidays and the new year is often a time for reflection. We certainly have much to reflect on this year. In
our never ending quest to put a positive spin on things, at least we can say we all survived 2008. A little
battered and bruised, but still kicking. The Amazing Super Ryan reminded us all, repeatedly, just how amazing he
truly is. He has endured SO much this year starting with surgery in February and winding up with the 2 1/2
weeks of hell in October/November. He came through it all and is still the sweet, charming and lovable little
boy he's always been. Some kids get to this point in treatment and have had enough and will fight and resist
everything - and who can blame them. Ryan still AMAZES everyone with his resiliency and willingness to keep on
keeping on.
And his fans are loyal. We were at the clinic yesterday and swung by the hospital to visit Ryan's favorite
nurse, Elizabeth. She had floated to another floor so they called her and said "your favorite patient is here
to see you." Without hesitation she said "Ryan Reardon's here?" No need to ponder who it might be. No one else
holds the title of "favorite patient" in her mind and she immediately came down to see him. She, Sarah the
Childlife Specialist and I spent a little time reminiscing about the beginning of Ryan's treatment. How he was
so little yet so cooperative and uncomplaining. Elizabeth said she's never had a patient like him. Whatever had
to be done he accepted without tears or tantrums. He was also the very first patient Sarah was introduced to
when she took over as Childlife Specialist on 7West. She and Ryan have a special bond too and he always wants
to spend time with her on our visits. About 2 weeks or so ago we were at the hospital and as we stood waiting
for the elevator, Ryan looked up at me with a big smile and said "I have such great memories if this place."
HUH????? Wow, I just about fell over. I guess that's a testament to the wonderful people like Elizabeth and
Sarah who make it easier for them. And of course to the one and only Amazing Super Ryan.
So in less than 2 weeks we will hit the 5 year mark since diagnosis. Taking the glass half full view, at least
we're still in the fight. We've said good-bye to soooo many little friends in that time. Taking the glass half
empty (and somewhat selfish) view, we sometimes wonder why Ryan couldn't be among the many very lucky kids we
know who are off-treatment and doing great. We are certainly thrilled for them, but I'd be lying if I said we
didn't have a pang or two of "why not Ryan" from time to time. It's not envy really because we truly wish all
these kids a long and healthy life. They are all very dear to us and give us hope. But the seemingly random,
unknown, unexplainable reasons why one kid does great and another relapses is more maddening than I can
describe. One of the many medical mysteries of neuroblastoma.
Continuing in the reflective mode, and as we did last year, we want to take a moment to honor and remember some
of the brave warriors who are forever free of the beast. Some fought for many years, some for less than a year.
But all touched and changed many lives and deserve to be remembered. I hope we never find out first hand, but I
think the only thing worse than losing a child is feeling as though they have been forgotten by others. Here is
but a very few of 2008's newest angels.
Austin Melgar, Carter Moore, Courtney Saunders, Marissa Monroe, Harrison Nichols, Eden Brunskow, Emily Adamson,
Gustavo-Alexis, Kody Edwards, Brody Hurt, Philip Wilson, Faith Griffin, Emmanuel Rochester, Zachary Morris.
Faith and Philip did not have neuroblastoma but were familiar faces at the Ronald.
Please say a prayer for comfort and strength for these newest angel families as well as those of past years.
On the medical side of things, Ryan's first round of ABT751 was completed last Tuesday and his labs were great -
for him anyway. No transfusions needed, no fever watch, no puking, except once, though I really don't think it
was related to the medication. He's been going to school and even participated in the annual Festival of Lights
the school does every year (he missed last year). Ryan's grade does Hanukah and Ryan was a candle in the
Menorah. He was the eighth candle which as my friend Sue accurately pointed out is "the most miraculous one of
all". How appropriate!
His labs yesterday were down a tad but again, nothing major and no transfusions needed. His liver enzymes were
quite elevated but that is expected and they were within the acceptable range. They usually come down again and
he should start his second round of ABT751 next week after another echo cardiogram. After that round, they will
scan and do bone marrows. I wish Boston did 4 sites for the BMs like NY does, but they only do two. They looked
at me kinda funny when I asked if they'd do four upon request. I think they said something about needing a
really good reason. I don't understand why "frantic parent" isn't a good enough reason?!?!?!
And with a hardy B-BYE and GOOD RIDDANCE to 2008, we leave you with the lyrics to a song called "Courage Is..."
which another NB mom shared on her son Jack's site. Please pray for Jack as he has recently relapsed.
www.caringbridge.org/visit/jackbartosz. Please also pray for Coleman Scott (www.carepages.com and under "visit"
type "colemanscott"). Coleman has medullublastoma and is on hospice.
Courage Is.....
Take all my vicious words
And turn them into something good
Take all my preconceptions
And let the truth be understood
Take all my prized possessions
Leave only what I need
Take all my pieces of doubt
And let me be what's underneath
Courage is when you're afraid,
But you keep on moving anyway
Courage is when you're in pain,
But you keep on living anyway
We all have excuses why
Living in fear something in us dies
Like a bird with broken wings
It's not how high he flies,
But the song he sings
Courage is when you're afraid,
But you keep on moving anyway
Courage is when you're in pain,
But you keep on living anyway
It's not how many times you've been knocked down
It's how many times you get back up
Courage is when you've lost your way,
But you find your strength anyway
Courage is when you're afraid
Courage is when it all seems grey
Courage is when you make a change,
And you keep on living anyway
You keep on moving anyway
You keep on giving anyway
You keep on loving anyway
Courage is........Ryan.
Thank-you for all your prayers for Ryan. Please pray that 2009 brings the miracle he needs.
Blessings to all for a happy and HEALTHY New Year.
Love,
Norma and Paul
DECEMBER 19, 2008
Hi everyone,
The Plan is in motion. This past Tuesday Ryan and I headed into Boston to start his ABT751. It was a LONG day -
like there are any short ones at clinic. Before he could start the ABT751 needed a cardiac echo first, which we
knew. We arrived at Children's in the morning for his echo but they were running late of course and we waited an
hour. After that, we no sooner got to the Jimmy Fund clinic to do the consents/exam and start the ABT and they
immediately sent us back to Children's (thankfully only across the street) because they realized they also
needed a CT before he could start the new protocol. "Go right now and they'll take you right away". Yeah,
right. That turned into a 3 hour ordeal that had Ryan alternately mad as a wet hen and threatening to leave or
crying in frustration - and hunger. He hadn't eaten since 7 a.m. and we didn't get out of there until 3:30. A 3
hour CT fiasco. This was the first time he'd ever had to drink 2 contrast drinks. I couldn't believe it when
after an hour they said "they'll be out with his 2nd drink soon". Huh?? Oh, and Boston won't use his port for
the IV contrast so they had to put an IV line in his arm which also made his day. They claim the contrast is
too think and would gunk up his port. He's had probably a dozen or more CTs in NY and they seem to pull off
this amazing contrast-through-the-port feat with no problem (those wild and crazy New Yorkers). So, the CT
itself took all of 5 minutes and then it was BACK to the clinic to sign consents, etc. While waiting for the
paperwork, I had to quickly run out to McD's to get him food before he chewed his arm off. It's now after 4:00
and yup, you guessed it. It was now too late to actually get the medication and start it, so we had to go back
to Boston on Wednesday. AAARRRRGH!!! BUT, he did start it Wednesday and has had 3 doses so far with no side
effects. We go in to the clinic once a week for blood work and an exam. He's "on" for 7 days and "off" for 14.
I'm not sure how many rounds he'll get. It depends on a lot of things so we'll just take it one round at a
time. They'll also scan him after the 2nd round to see how he is responding to it.
While in the clinic we bumped into our friend Ethan and his dad. They're from New Hampshire but we actually met
them in NY when the boys were both doing 3f8 together. Ethan recently relapsed after being clean for 3 years. He
is just coming off high dose chemo and a 2 week inpatient stay. His dad related a story to me that just brought
tears to my eyes. They were working on Ethan's letter to Santa recently and what do you think he asked Santa
for?? Hair.
I glanced back at the updates for last December. I'd forgotten that Ryan had been inpatient in Boston for a
fever until the 22nd. He was recovering from the chemo and radiation he'd had for his relapse of October 2007.
We never thought exactly one year later we'd be doing the same thing all over again this October. I had also
made some comment about being glad to put 2007 in the rear view mirror. I guess I can reiterate that for 2008!!
BUT for now, we're gearing up for Christmas and making it as special as we can for the boys. Mother Nature is
providing the ambiance as it is snowing like crazy as I type. There is a Band of Parents "HOPE" ornament on our
tree that Ryan insists on putting on the tree himself. We have "HOPE" Christmas cards to send and more "HOPE"
ornaments to give out. We have "HOPE" for 2009.
Please pray that the ABT751 works for Ryan and he has a great response to it. We're no supposed to expect it to
reduce his disease, but we can......ya know......hope......
Merry Christmas.
Love,
Norma and Paul
P.S. Some of you have inquired how Matthew's Black Belt Spectacular went. Actually, it was cancelled AGAIN. We
had a nasty ice storm last week and the school where it was to be held was being used as a shelter for storm
refugees. No new date yet. :-(
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Hi,
Just a real quickie......we just got an e-mail from NY. ALL of Ryan's bone marrow aspirates are negative for
disease!!!!! This is HUGE!!!!!!!!!! Thank-you God!!!!!!!!!!!!!!!!
Love,
Norma and Paul
DECEMBER 11, 2008
Hi everyone,
We have a new plan. It's not as aggressive as we wish we could be, but his sluggish blood counts won't allow any
chemo or radiation right now. Dr. Kramer called on Wednesday and I got slightly more detail on his MIBG. Some
spots are gone, some remain in the lower legs and skull but are faint. She gave us 3 options, which in effect
say that they have nothing for us in NY right now. One choice is Accutane, which is oral and easy to do but he's
done many rounds of it in the past and relapsed on it. The others are fenretinide which is sort of an IV form of
Accutane and you have to be inpatient to receive it. And lastly ABT751. Fenretinide and ABT are not done in NY
but are in Boston. None of these would impact his counts and are generally well tolerated. Today we e-mailed and
talked with Dr. Shusterman in Boston and we've decided to go with the ABT751. It is oral, and aside from weekly
blood work/check-ups, we can administer it at home since its in pill form. He'll be on it for 7 days and then
off for 14. The upsides are, again, no hit to his bone marrow, we can be home (most importantly for Christmas),
the farthest we have to go for anything is Boston, and he can go to school. The downsides are that, most likely,
we can only hope that it keeps him stable. Sometimes they do see disease reduction, and sometimes disease
progression. And some kids but not all get pain in the hands and feet and most get constipation - which would be
a change from the 2 1/2 weeks of diarrhea he experienced with the last chemo.
As we've said many times before, his body is tired and our options are dwindling. We're still in contact with
Vermont are are still seriously considering that. The main reason we went with the ABT now is that going to VT
would have meant being there for Christmas. Ryan has been adamant that he wants to be HOME for Christmas and we
are honoring that wish.
We're trying hard to make this a nice Christmas for the boys but we're having to dig much deeper for that
Christmas spirit this year. The anxiety level really reached a fever pitch this week waiting for results and
recommendations and then having to make the decision of which way to go with treatment. We go in next Tuesday
for an echo cardiogram, the only test they need that wasn't already done last week in NY. I believe he'll start
his cycle that day. This is just the latest in a long list of agonizing decisions we've had to make over the
last several years. We hope and pray it's the right one.
Today I read an update for our friend Jeremy Banish. It wasn't really an update, but a beautiful poem Jeremy's
mom wrote him. I hope you don't mind Terri, but I'm going to steal your beautiful words because they say exactly
what's in my heart too.
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,
Keep praying, especially that this treatment will actually reduce his disease. And that God will continue to
guide us in the right direction to bring Ryan to complete healing.
Love,
Norma and Paul
P.S. And don't forget: cookiesforkidscancer. Our shipment
arrived this week and I can personally attest to their yummyness - my favorite is the Lemon Sugar Cookie. And
www.iGive.com for your internet shopping. Select "Band of Parents" from pull-down menus on both to be sure BoP
gets the benefit.
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