Hi everyone,

Ryan successfully made it to Camp last Friday. His labs on Sunday were good.....no need for transfusion and white count very good. He had a good time Friday, Saturday and Sunday, but Sunday night he started not feeling well. Didn't sleep well and was taken to the infirmary early Monday morning with nausea and mild vomiting. I got a call around 1:00 p.m. letting me know he was still there and still nauseated and vomiting. Déjà vu. NOOOOOOO, not again!!!!!!!!!!!!! I had sent all his anti-nausea meds which they were giving him, later switching to IV form. He never got really bad, but never really improved either. We decided to let him stay the night in the infirmary where they gave him hydration too. The plan was to check back Tuesday morning to hopefully find he was a new man and doing fine. We didn't want to cut his week short if this episode would pass on it's own. He looks forward to Camp SO much. Tuesday morning he was a tiny bit better and we were going to wait some more to see if he could participate in any of the morning activities before we made a decision. Alas, it was not to be. He decided himself he wanted to come home. That speaks volumes about how crappy he felt. So Matthew and I went down yesterday to pick him up and drove straight to the Jimmy Fund Clinic. He puked a few times in the car. At the clinic he mostly slept while they did labs and gave him more IV meds and bolus of potassium as his level was pretty low. I was dreading them telling me they'd have to admit him, but they didn't. We were able to set up IV anti nausea meds to be delivered to the house for us to administer (as we have many times before), VNA to come out this morning to draw labs again and see where his chemistries are at. We also have IV hydration to run overnight, since he's not drinking/eating at all.

He had a pretty good night. Before bed he was slightly nauseous but has not vomited since around 2 p.m. yesterday. We are still slated to head to VT on Thursday for a quick one day visit. His oral chemo has been held since Monday since he isn't really taking much by mouth and since it is chemo, so it may make nausea worse. So far this morning he is not nauseous, just tired and a bit worn out.

Our family vacation is supposed to start on Saturday. PLEEEEEEASE pray that this episode passes completely before then so he/we can at least have a good vacation.

He did get 3 good days in at camp. He made a birdhouse and two planes in woodshop, went fishing and caught a BIG fish and got in some good pool time as well.

Please pray for our friend Nick who had a frightening seizure, stopped breathing and needed CPR. He's now at Sloan for scans and tests to see what caused this. Like Ryan, Nick never seems to be able to catch a break and gets bizarre side effects and complications no one else gets.

As always, thank-you for your prayers for Ryan, all our NB warriors and Angel families.

Love and "100% hope",

Norma and Paul

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JULY 13, 2010

Hi everyone,

Well it sure is nice to have a prayer answered every now and again. Ryan's arm pain is minimal at best!!!! It started feeling better even before his radiation Friday morning and he hasn't needed the narcotics since Thursday night! He uses the sling occasionally but hasn't really needed it much. Yesterday in clinic his labs were GREAT. Platelets at a whopping 102 which pleasantly surprised everyone. His white count a not quite ideal but still pretty respectable 1.73. He had a cardiac echo done also to be sure his heart function is good before we started his new chemo. One of the drugs, Doxil, can sometimes cause heart damage. For you NB folks out there, it is a more recent version/cousin of doxorubicin which every NB kids gets up front but this one should be less likely to cause said heart problems. The other drug he's getting is Vorinostat (aka SAHA, aka Zolinza). It's 2 daily pills. The doxil is a 1-hour IV infusion but only given on Day 1 of a cycle.

We got home today and tomorrow will start racing around getting Ryan ready and packed up for Camp Hole in the Wall. He leaves Friday. Thursday we'll go to Boston for labs to be sure those platelets are holding steady before he leaves. He'll get labs done a couple of times while at camp and they can give a platelet transfusion if need be. We pick him up bright and early Thursday the 22nd and promptly drive straight to Vermont (UGH!!) for a check-up with Dr. Sholler before both she and we leave for our respective family vacations.

No idea when we'll rescan. Still shopping around for a "spine guy", though have a couple of leads. Summer seems to be flying by. We did make it to a beach on Lake Champlain on Sunday, but that's been it so far for summer fun.

And for a little excitement.... This past Friday Paul took the boys to Montreal, which is only 1 1/2 hours away, after Ryan's radiation treatment (I had to race home for an appt. so missed out). As they were coming back into the U.S., they were detained at the border because Ryan set off the radiation sensors. You know you're a cancer parent when this cracks you up instead of horrifies you. The border folks were quite nice but had to do their thing and it took about a half hour. Freaked Ryan out a tad, but the border guards gave him some cards (like baseball trading cards) of border patrol dogs pictures and stats. He liked that.

Thank-you for all your continued prayers for Ryan, all our NB warriors and Angel families. Please pray he has a fun-filled week at Camp, that he doesn't need a transfusion and that his white count stays above the "danger zone". And he doesn't know it yet, but this week at camp will be the last few days he'll get to spend with a wonderful counselor there at Hole in the Wall who has been a terrific friend to him these last couple of years. He also volunteers at the hospital every week so we see him fairly often. Yet another "good-bye" to an important member of his support system. :-( I have to work up the nerve to tell him SOON before camp. AAARRRGH!!!!!!!!! I hate this!!

Love and "100% hope",

Norma and Paul

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JULY 8, 2010

Hi everyone,

Oy, where to begin! We haven't had such a long, jam-packed day in a quite a long time, complete with good news, bad news, scary news, surprising news and lots of running around. We started off at clinic at 8:30 for labs to see if Ryan needed platelets before his bone marrows later in the day. He did. While those were running, we met with Dr. Sholler and Dr Wallace (the radiation oncologist) about Ryan's persistent and quickly worsening arm pain. Narcotics were only dulling the pain and he has not been using the arm much at all. Dr. Wallace suggests a one-time mega blast of radiation rather than the usual lower doses over several days. In adult studies they've determined there's no real therapeutic difference between the two. Okay, that's better for Ryan since he's scheduled to leave for Camp Hole in the Wall next Friday. During the discussion Paul asked if this pain could be due to a fracture rather than disease progression. We've seen many NB kids suffer bone fractures with no obvious direct injury but when bones are weakened by disease and chemotherapy. They agreed it was possible, so an x-ray was promptly ordered to be done immediately. We're in a time crunch because his MIBG scan is scheduled for 11:00 and it is already about 10:00. We packed up Ryan in a wheelchair since he was sleepy from his pre-meds, nurse and IV pole in tow since his platelets were still running, and headed down to the 2nd floor for his x-ray. From there, zoomed up to the 3rd floor for his radiation simulation. Platelets done. Disconnected from pump. Nurse leaves. We now zoom down to the 1st floor for his MIBG scan. I leave Paul and Ryan there for the 1 1/2 hour scan because poor Matthew is still back up in the clinic amusing himself with the Wii but starving since he only a donut hole for breakfast. As I enter the infusion bay to retrieve Matthew I bump into Dr. Sholler who tells me the x-ray indeed showed a fracture (the surprising news). Great. And she got us a "squeeze you in whenever you can get here today" appointment with an orthopedic down the road. Texting Paul this news as I walk Matthew to the cafeteria I'm now wondering if this affects whether or not we can do the radiation.

Bone marrows happened around 1:30 finally. As Ryan is waking up and having a slice of pizza, Dr. Sholler comes in with scan results. There are no new spots on his MIBG (the good news). That bleeping paraspinal tumor though is bigger (the bad news). Only by 4 mm BUT OF COURSE the ONLY direction it grew in was.......you guessed it.....more into the spinal canal, further compressing his spinal cord (the scary news). Now, Dr. Sholler is the eternal optimist and can put a positive spin on almost anything and even she said she was very concerned about this.

She put him on a steroid to help reduce any inflammation or swelling in the tumor area. It's obviously the time to switch treatments so next Monday we will start him on his personalized medicine regimen!! He will get 2 of the 4 drugs recommended to start with. Dr. Sholler will also start calling around to find a surgeon who might be willing to take this on. Anyone know a great "spine guy"?? To address the arm issue, Ryan was given a dose of zometa, a bone strengthening drug used to treat osteoporosis but also used for bone metastases in cancer patients. It's given once a month. And the radiation is on for tomorrow (Friday) morning.

So at around 3:30 Paul and Matthew headed to the pharmacy to get the steroid prescription filled and a groggy Ryan and I headed off the find the orthopedic. We liked her a lot. She showed us his x-ray and explained that the fracture is a result of the disease right there that has eaten away at the bone so it's more like eggshell rather than hard bone. She thinks the radiation will help a lot to kill the disease and thereby allow healthy bone to regrow. Her lips to God's ears!!! The disease and fracture are very, very close to his growth plate. If the growth plate is hit with radiation, it could impact the growth of his arm and ultimately shorten it by an inch maybe. Not insignificant, but way down on about page 472 of our Mega-List of Mega-Worries at the moment. Since the fracture is so high up on his arm, there's no way to do a cast, so he was given a sling to mostly help with his comfort level and give the arm support. She was very good at explaining it all in terms Ryan could understand and he seemed pretty unfazed by it all. It should take about a week before the arm starts feeling better.

Overall, we're relieved. We both were fearing the worst......a major progression of disease. "Explosion of disease" they call it. We've seen it happen and live in fear of it. The way the arm pain go SO bad SO fast made us think the disease was running rampant. Seems odd to be relieved your child has a painful fracture, but it's the lesser of the evils. It's probably a good thing the day was so busy. We didn't have time to make ourselves crazy(er) with worry.

Please pray that Ryan's arm feels better fast and that he can enjoy his week at Camp. And of course pray that these new drugs knock back this EVIL disease!!

Love and "100% hope",

Norma and Paul

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JULY 1, 2010

Hi everyone,

It was a very quick trip to VT earlier this week. We weren't sure we would make it as Ryan had a bad day on Sunday with the return of nausea and vomiting plus he slept and slept and slept and slept most of the day. But we made it Sunday evening after Matthew's band's performance. Labs done on Monday in clinic showed his white cell count had jumped waaaay up to 13 (it was only 1.08 on Friday). So, no more GCSF shots! Dr. Sholler decided to go ahead and give him one more dose of vinblastine. We also resumed the oral rapamycin and headed home on Tuesday. So far he's feeling okay except for that pain in his back or side of his ribcage that crops up almost every day. Here's another "but"......but doesn't persist, just comes and goes. Worrisome for sure. We'll return to VT next week for s-s-s-scans to see where he's at. If his disease is better we would continue with the same drugs. If not, we'll move on to the drugs recommended by the personalized medicine study.

Many prayers needed for our friend Connor Gerber and his family . In the middle of May he was scoring goals for his soccer team and yesterday, out of options, his parents made the agonizing decision to bring him home on hospice care. Incomprehensible. He turned 9 just a few days ago.

Please, please, please pray for at least stable scans next week for Ryan. HE NEEDS TO CATCH A BREAK!!!!!

Love and "100% hope",

Norma and Paul

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JUNE 26, 2010

Hi all,

Just a quickie. Ryan was released from the hospital Friday afternoon. He had a really good day Thursday, feeling MUCH better, hanging out in the playroom and nibbling on food. We have IV hydration to use overnight if he can't drink enough during the day and a boatload of oral meds. He is still neutropenic (immune-suppressed) so we'll be laying low at home over the weekend.

Sunday, after Matthew's band performs at Salisbury Beach, the boys and I will head to VT. Monday we'll head to clinic to sit down with Dr. Sholler to figure what's next. With his white cell count so low, I don't think we can start any therapy right away. We're continuing the GCSF shots to raise his white count, so we'll see what his labs say on Monday. He's been having more pain in his back this past week, so we're worried about that and want to get going with the personalized med. study ASAP.

Thank-you to everyone who helped us out with "Matthew coverage" this week!!

Please continue the prayers for Ryan as well as all our NB warriors and angel families.

Love and "100% hope",

Norma and Paul

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JUNE 21, 2010

Hi everyone,

Still inpatient, but some improvements.

Ryan's nausea and vomiting have gotten better. He even had a few tiny tastes of Italian Ice last night and this morning. along with sips of ginger ale. The first time he threw it up, but he's kept the others down. He was fine all night until about 5 a.m. and got sick a few times. As for the blood pressures, he went over 24 hours without needing meds for it, although it was always hovering on the threshold of needing them. Late last night however it did spike up and he got one dose of hydralazine.

His white cell count and ANC have been surprisingly low. He is neutropenic so yesterday we started GCSF shots to boost his white count. His hemoglobin was borderline for needing transfusion but since he's feeling so weak they decided to go ahead and transfuse him to hopefully perk him up a bit. Also, since he hasn't eaten in a week, they've been considering starting TPN (IV nutrition), but will hold off one more day to see if this trend of less nausea will continue so he can start eating on his own.

We were scheduled to go back to VT tomorrow but that obviously isn't going to happen. Dr. Sholler will be back from the conference in Sweden at the end of the week so we'll check in with her then.

So Ryan is very, very, very down in the dumps. Yesterday I thought I'd try to cheer him up by taking him down the hall to the Resource Room to visit one of his favorite Child Life Specialists who had been out on maternity leave and returned at the end of May. When we got there we were told she moved back home to Texas 2 weeks ago!! Oh, the look on Ryan's face. He was devastated and just plopped down in a chair and fought back tears. It was earlier in May that is VERY favorite Child Life Specialist had left Children's. Both have been there with him from Day 1 and he now feels like he has no friends here anymore, save for his #1 nurse Elizabeth. So my plan to cheer him up blew up my face big time.

That's about it.

Thank-you for your prayers for Ryan and all our NB warriors and angel families.

Love and "100% hope",

Norma and Paul

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JUNE 21, 2010

Hi everyone,

Here we go again. Ryan is back inpatient in Boston for......you guessed it......unexplained, incessant vomiting. *sigh*

Paul brought him to VT on Wednesday for his weekly IV vinblastin. Overnight Wednesday he started getting sick. Spent most of the day in clinic on Thursday getting hydration, anti-nausea meds as well as platelets and red blood as his counts had dipped a lot more than expected. He seemed much better on Friday so they came home. Friday evening into Saturday he really went downhill with very bad vomiting so Paul brought him to the ER at Children's while I was busy with a too-late-now-to-cancel-now yard sale. Needless to say, Ryan was dehydrated, needed lots of IV fluids and IV anti-nausea meds. So here we are again with this bizarre scenario. He's still having lengthy bouts of vomiting. He got platelets yesterday and again overnight. He hasn't eaten since dinner on Wednesday. They're going to do a head CT later today to rule out anything going on up there. That means they will put an IV in his arm because Children's is the only hospital on the planet that won't use a port for IV contrast, which is SO infuriating!!

And the mysterious high blood pressure made it's return as well. Overnight and today he's had intermittent high blood pressure which they've given him meds for on an "as needed" basis.

So what's causing all of this.....again? It's hard to blame the chemo he's been on. He had no problem with it the first week. Who knows. It's Ryan. The Man of Mystery. It's both amusing and disturbing to see multitudes of intelligent, well-educated, experienced MDs all scratching their heads.

The other news from last week is that the radiation oncologist in VT has decided it's not safe to radiate Ryan's spinal tumor again unless it is causing significant pain. The risk of doing irreparable damage to the spinal cord (i.e. paralysis) is very real. He talked with the radiation oncologist here in Boston who did the original spinal radiation after Ryan's brain relapse and she concurred. So that's off the table. He was having some pain in another area of his ribcage which they think is nerve pain attributed to the same tumor so they started him on neurontin which is for nerve pain, but which he hasn't been able to take due to the vomiting. But the pain has mostly stopped thankfully. The neurosurgeon was unable to attend the tumor board meeting on Tuesday so we don't know if he/she will consider a surgical option. Hopefully, that discussion will happen at the upcoming Tuesday meeting. However, Dr. Sholler won't be there since she and most of the NB world are in Sweden for the Advances in Neuroblastoma Research conference this week.

And the big meeting of the minds to distill down Ryan's biopsy/lab report to an actual personalized medicine plan of action DID happen on Friday. We have a road map. A total of 4 drugs to be done on alternating cycles of 2 drugs the first 3 weeks, then the other 2 for 3 weeks. As of Friday, before Ryan tanked, the plan was to do another cycle of the vinblastin/rapamycin then rescan to see where he's at. If improved, just keep doing the same thing. If not, go ahead and start the new plan. Of course now this new wrinkle with the vomiting throws everything off.

So, please pray that this latest bump in the road will resolve soon so we can get back to treating the NB.

He has missed the last day of school (today). Add that to the lengthy list of things he's missed because of this $*#&@^!* disease! And the misery he's endured. And the time away from home. And, and, and.......

Please keep all our warriors and angel families in your prayers as well.

Love and "100% hope",

Norma and Paul

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JUNE 12, 2010

We're back from Vermont. What I wouldn't give to be able to report good news. However, scans revealed that the paraspinal tumor in Ryan's back is larger. Only slightly, but it is pushing it's way further into his vertebra and compressing the spinal cord. Yes, that is indeed as bad as it sounds. And there appears to be a new nodule just above it. Not quite sure what it is though. It shows up on the regular CT scan but not the MIBG, which is the neuroblastoma specific scan. So is it NB or isn't it? It will get discussed at their tumor board meeting on Tuesday. Dr. Sholler is thinking about maybe doing a PET scan next time as well to get a better read on what this thing is. All his boney lesions remain stable. Bone marrow still positive for disease at about the same level as last time. His VMA is a whopping 46 now and his HVA also a whopping 47. LDH is up too.

Needless to say, he's off the DFMO/etoposide. On Thursday we started him on vinblastine (once a week IV push) and rapamycin (once a day pill) as sort of a stop gap to bring us to whatever the personalized medicine recommendations are. I think we should have that at the end of next week. And then we will ONCE AGAIN pin our hopes on something new.

It's funny how you adjust your expectations and temper your reactions the longer you're in this. What would have been absolutely devastating news a while back, we now qualify with "BUTs" everywhere. There's a new nodule (but it might not be NB). It's still in his bone marrow (but there are no new boney lesions and his organs are fine). His paraspinal tumor is bigger (but only slightly and only causing occasional pain). His disease has progressed again (but his disease is slow growing and not tearing through him like wild fire). Yet another new treatment has failed (but there are still others we can try). The "buts" are all that stave off a complete and ugly meltdown. Or maybe after all these years we've just learned how to take a punch without going down in a heap.

At the moment our biggest concern is that paraspinal tumor and it's encroachment on the spinal cord. A few months back we inquired about doing surgery to remove it. The neurosurgeon in VT did not want to touch it unless it was causing problems. The reasoning being that due to scar tissue from earlier radiation and nerves around it, surgery could end up doing more harm than good and why risk it if it's just sitting there behaving. Well, it's not behaving anymore and we are fast approaching the trigger point of having to take that risk. Hopefully, this new cocktail mix he's on now will knock it back a bit.

Monday we should hear if the radiation oncologist can zap his tumor again. It's been hit before and may be maxed out. Tuesday we should hear what came out of the tumor board meeting and if surgery is an option.

Oh, and Thursday night for some reason Ryan spiked a temp of 103. Because of his port, we had to go the ER for IV antibiotics. Our first visit to the VT ER. I have to say, as ER visits go, this one was one of the better experiences. Didn't have to wait an hour for someone to even come in and take vitals (like Sloan Kettering's NON Urgent Care), Ryan didn't have to endure 4 hours of torture while really inept nurses stab him repeatedly trying to access his port (like Sloan Kettering's INEPT Urgent Care), they gave us food, were pleasant and attentive. The whole thing took only 4 hours. Hmm, it can be done!

No shortage of bad news this past week.

Please keep our friends in your prayers who have also had disease progression.

Nick Franca and Evan Lindberg

Also our good friend Alina is scheduled for surgery next week Alina

And of course, Ryan needs LOTS of prayers now.

Love and "100% hope",

Norma and Paul

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JUNE 4, 2010

Hi everyone,

We're off to VT on Sunday for scans next week.

So remember that fantastic VMA of 15 that we were so happy about in the last update. Well, it's back up. 31 two weeks ago, 35 last week. Haven't gotten this week's yet. Ryan has complained of pain in his upper left arm and back from time to time. Nothing constant or persistent. Only had to give him Tylenol for it once and he hasn't complained at all this week, which of course is good. However, Dr. Sholler is concerned enough that she has moved his scans up to next week instead of the week of the 14th. At that time we'll also do the needle biopsy (Monday) for the personalized medicine study. This week he began his 5th and final cycle of the DFMO/etoposide study. It was during the 4th cycle that he had those complaints and the VMAs jumped. Not to be superstitious or anything, but Ryan seems to have this "4 cycles and out" syndrome. 4 cycles of ABT-751 and he progressed. 4 cycles of TPI-287 and progressed. We'll see. Maybe we're worrying for nothing and his scans will be stable.

On a brighter note, last Friday we needed to go into the clinic for a red blood transfusion (no, that's not the bright part). But we went AFTER the school's Memorial Day Program because Ryan had a little speaking part. A couple of kids from each class are selected to read something they wrote on various themes surrounding Memorial Day. Ryan was supposed to have done this last year, but we got stuck in VT and he missed it. So this is what he wrote last year and got to read this year. "Hope is the thing you carry with you every day, and when you do, God will always be with you, no matter what." I have no idea how he does it. Seriously. I know I'm very, very biased, but if Ryan were the prototype, I would condone human cloning. The world would be a MUCH better place?

Oh, and the new piggy bank donation total......$6,209.83. He's already said that when he bank is full again, it's going to Dr. Sholler. Sorry BoP, but he likes to spread his largesse around. :-)

He had a great birthday. And the Strawberry Parfait Pie was "good, but not as good as Nanny's. There's just something about Nanny's." I have to agree. Okay, I'll keep trying. He had his two best buddies sleep over and we went to the movies (Iron Man II) the next day.

Overall I have to say he's been doing pretty well, going to school, hanging out with friends, etc. But, for NB parents every little thing out of the ordinary sends us into a panic. The Worry Button simply does not have an "off" position. Fortunately, thanks to Ryan, neither does "Hope".

Lastly, our NB family has lost yet another warrior. Please pray for the family of Melina Riniolo who gained her angel wings yesterday after battling for over 5 years. We met her and her family up in VT. Tonight is her brother's Senior Prom and he will soon graduate high school. What should be a joyful time is overshadowed by heartbreak. He will go to his Prom because, as his mom wrote, "he knew how pissed off Melina would be at him if he missed it because of her...and he's right."

Many other warriors are struggling right now. Please keep them and all our Angel families in your prayers. And of course, please pray that Ryan's scans next week DO NOT show progression and that a good plan will come out of the personalized medicine study.

Anyone interested in a very good explanation of the study, visit our HREF="http://www.caringbridge.org/visit/ethansmith">buddy Ethan's site. His mom did a good job of explaining it in a couple of recent entries.

Love and "100% hope",

Norma and Paul

P.S.

Jack's Magic Bean Fund raises money in support of kids with cancer. Jack is an NB angel whose family is honoring him through the Fund. They provide financial support to families in need as well as fund NB research. They're having a fundraising bike ride on June 19th, so please consider sponsoring Jack's Mom, Linda by visiting her Firstgiving page.

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MAY 18, 2010

Hi everyone,

Finally, the long awaited bone marrow results. NO idea what took so long this time but, at any rate, there appears to be a slight increase in disease in his bone marrow aspirates. Last time there was 0.2% disease and this time it's 2%. We thought last time there was absolutely nothing, but I guess 0.2% is pretty close. So, the positives: stable scans; the VMA which was still pending with the last update is 15 (down from 26 on the previous test and a scary high of 32 in early March); Ryan feels great; his counts are holding on nicely so far this cycle, which would indicate happy, MOSTLY healthy bone marrow. Negatives: possible slight increase in bone marrow disease BUT, we're inclined to believe that this could just be a function of the particular sample taken each time. I guess some samples can be more dilute if more blood is pulled along with the marrow.....at least I think that's how Dr. Sholler explained it. It's hard to believe there's really more disease when he had such a huge drop in his VMA and his counts are strong. Dr. Sholler is still confident we are on the right course given all of these positives.

Also, we're moving forward with scheduling a needle biopsy of his soft tissue tumor in his back for the purpose of at some point enrolling him in the personalized medicine study. That would happen in June either when we return to VT for his work-up (week of the 15th) or possibly the week before.

Ryan is doing well and going to school. He's excited that he's been accepted again this year at Hole in the Wall Gang Camp. Yeah! That news in yesterday's mail helped lift his spirits. He was pretty down after having to say good-bye to his favorite Child Life Specialist who is leaving Children's Hospital. Sarah started at Children's when Ryan was first diagnosed and has been a wonderful friend to him (and us) over the years. There's just something so comforting to know a familiar, friendly face is waiting when you're stuck in the hospital. Always smiling, always willing to do whatever would make Ryan (or any patient) happy, she is what every Child Life Specialist should aspire to. Having travelled to enough hospitals, Ryan is a very good judge on that!!!

And Thursday the 20th will be Ryan's 11th birthday!!! Last year, we had JUST come back from our Florida trip, immediately drove to VT where Ryan spent his birthday having bone marrows done. Fun, huh? This year we are HOME and he is having a couple of friends sleep over, hitting the movies and whatever else we can think of. He's decided he wants a birthday pie instead of cake. He has requested that I make my mother's "signature" pie, Strawberry Parfait. This pie has graced every Thanksgiving dessert table not only as far back as Ryan can remember, but as far back as I can remember too. I've never made it before......a little nervous.......a lot pressure here.....hope it comes out right. Wish me luck! Hmm, do you think candles will stand up in the whipped cream topping??

To everyone who sent in their $85.89 (among other generous amounts) to match Ryan's piggy bank donation to Band of Parents several weeks ago, I wanted to let you know that the other day our BoP president announced that those donations netted a whopping $5,852.16!!!!! Wow!! Ryan is VERY happy. We want to thank everyone from the bottom of our hearts for their generosity. Oh, and he is now refilling that piggy bank.....stay tuned.

Many friends needing prayers. Jack is having surgery this week,

soon Alina is having surgery,

Ethan Smith

Ylaria

Sal

Please keep them and all our NB warriors and Angel families in your prayers.

Thank-you for your prayers for Ryan.

Love and "100% hope",

Norma and Paul

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MAY 7, 2010

Hi all,

I was going to wait until next week to update but I've had many people asking about Ryan's work-up, so here's a preliminary update as we are still waiting for the bone marrow report.

The scans are basically stable. There was a very slight.....like 1-2 millimeter.....change in the paraspinal tumor, but since it is SO minimal, they are calling it stable. I guess who and how it is measured can account for such a tiny variation. All his boney disease is stable. The bone marrows is where it gets a little fuzzy. As Dr. Sholler and I were looking at the scans on the computer, the lab called her with the preliminary BM results stating that there was disease in his aspirates. You may remember that his last work-up showed his bone marrow aspirates to be clean as a whistle. So, this was very disappointing to hear. However, today as we were driving home Dr. Sholler called my cell to say that her lab, as opposed to the hospital lab that she spoke with yesterday, said that the samples were "the same as last time". Hmmmm. The final written report from the other lab is not back yet, neither is his VMA. We'll obviously hash it out better next week when we have all the info.

Ryan is feeling fine and his labs are great.

I'll update again next week when we get it all figured out.

Thank-you for your prayers for Ryan and all our NB warriors and Angel families. Please say an extra prayer this Mother's Day for all the Angel Moms missing their babies. We have some good friends for whom this will be their first Mother's Day without their child.

Love and "100% hope",

Norma and Paul

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APRIL 24, 2010

Hi all,

Long time, no update. But that's usually a good thing and certainly is this time. Ryan has been doing pretty great. Aside from the occasional clinic visit for labs and check-ups, we have been HOME. This past week he started the 3rd cycle of DFMO and 2nd cycle of etoposide. The addition of etoposide is definitely hitting his counts a bit. He needed one red blood transfusion with the last cycle and just barely managed to avoid a platelet transfusion last week. His ANC also has dipped close to the neutropenic level, so keeping an eye on that now that we've restarted the etoposide after a one week break. HOPING it doesn't keep him from being able to return to school next week.

This has been school vacation week and the boys have been enjoying themselves. We even got to go to a Red Sox game the other night.....thank-you Johnson Family!!

So now scans loom once again. We return to VT the first week in May for that. "Scanxiety": acute mental psychosis characterized by, but not limited to: irritability, loss of sleep, crying at the drop of a hat, nausea, vomiting, heart palpitations, hyperventilating, forgetting to breathe, headaches, loss of ability to be rational or think clearly, loss of ability to remember why you entered a room, loss of appetite OR inability to stop eating everything that isn't nailed down, pacing, incessant hand-wringing, sweating, staring blankly into space, facial ticks, stepping off a curb without looking both ways, and nonsensical muttering. Subjects should be assumed to be armed and dangerous. Approach with extreme caution, especially if you are a doctor. Attempts at humor, perkiness or inane platitudes are at your own risk.

Lastly, as we ruminate on another anniversary....6 years ago today was Ryan's first major surgery to remove his primary tumor and adrenal gland.....

For anyone who's interested, anyone who believes in never giving up hope, anyone wondering what happens to all that money we beg for, here's a couple of links about exciting new NB trials. One is a a very well done and interesting Philadelphia Inquirer article about a treatment at CHOP (Ryan was treated there back in 2004). We have two friends scheduled to enroll in this study soon.

and the other a really exciting personalized medicine trial open at Vermont Children's, which we may put Ryan on at some point, depending how the DFMO works out.

Thank-you for all your prayers for Ryan and all our NB warriors and Angel families.

Love and "100% HOPE",

Norma and Paul

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MARCH 31, 2010

Hi all,

We are home. After a dead car battery and white-knuckled drive yesterday through torrential rains that is. And we arrive with good news and better good news. The first good news is that Ryan's scans are stable. The better good news is that his bone marrow aspirates (the liquid marrow they suck up) is completely clear of neuroblastoma......for the first time in over a year. His bone marrow biopsies (the tiny chunk of bone they take) only showed less than 5% disease. Thank-you God!! This after less than 3 weeks on the DFMO. Wow. We were just hoping for status quo, so this was a wonderful surprise! Dr. Sholler was very pleased. Funny side note. Dr. Sholler had called me on Friday with these great BM results. Then on Monday she printed the written report, but it showed much more disease than she'd been told over the phone on Friday. This was very puzzling and very concerning and as we were reading it, Dr. Sholler kept saying "but this isn't what he told me on Friday." So she called the lab and talked to the person who'd done the testing. After a several minutes on the phone with him, we realized that the report we were looking at was from the exact date a year ago in March of 2009. The wrong one had been printed. Whew!

So on Monday Ryan started Cycle 2 of the DFMO and we added in the oral etopiside. His counts were a tad bit lower than we thought they'd be. ANC only in the 700's and platelets and hemoglobin dropped a bit too. We'll keep an eye on it and hopefully will not have to keep Ryan home from school due to low counts. His VMA (urine marker which is an indication of disease when elevated) did jump way up from 21 to 31 in less than a week and stayed the same on the next test........single digits is good......we're usually quite happy with teens. Odd since his marrow disease went way down. One theory (thank-you Karin) is that he has been taking his DFMO with lemonade. In NY they restrict certain foods before a VMA test that might skew the test. Boston and VT do not. Citrus is one of the things on the list to avoid. He's also been drinking a lot of hot chocolate which is also a no-no. So, we're hoping that's the problem and will definitely watch what he eats/drinks before the next test.

And the last bit of good news is that we do not have to return to VT until the first week in May!!! That would be for his next set of scans at the conclusion of Cycle 3. We REALLY need a nice long stretch at home, so we're very happy about it. Ryan is feeling great. With a little luck, he will be able to stay in school the whole time, get some tutoring in and get all caught up on his schoolwork.

Good news has been painfully hard to come by in the NB world in recent weeks/months, so we feel particularly blessed. Many of our friends are struggling right now. Especially Nick Franca (www.caringbridge.org/visit/francafamily) who has had his freshman year in college interrupted by the beast. Like Ryan, Nick tends to get every possible side effect and complication from chemo and is having a very rough time right now in NY. Please keep him in your prayers.

We are so grateful that DFMO not only appears to be doing the job, but is also giving Ryan great quality of life. I choke on that term and never thought we'd have to be considering it in our treatment decisions, but that is the reality. Though it's very early and we don't know how much benefit Ryan will ultimately get from this DFMO, we do owe a debt of gratitude to Dr. Sholler and other NB families.....like the Hutchinsons who just lost their precious Sam.......who have worked so hard to bring effective, less toxic treatments to our children.

As always, thank-you for your prayers for Ryan and please keep all our Warriors and Angel families in your prayers as well.

Love and "100% hope",

Norma and Paul

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MARCH 17, 2010

Hi everyone,

HAPPY ST. PATRICK'S DAY!!

We are home from Vermont, week one of the 21-day cycle of DFMO is completed. Ryan is doing well. Aside from one pukey day last week, his tummy has been behaving and the DFMO so far has been a breeze. He's feeling so well in fact that today, for the first time since October, he went to school!!!! He was SO excited and thrilled to be going. We're hoping he can keep this up in between VT trips. We will be returning to VT on the 24th for scans before starting the 2nd cycle. The flood waters are receding around town, the sun is shining and it's a good day. Hoping to string a few (thousand) of these together!

HOPE and DESPAIR:

HOPE - Last Thursday in VT I had woken up very early, mind racing to what it always races to, dwelling on the setbacks, the fear and anxiety creeping in. My very simple, extremely frustrated prayer at that moment: "Okay God, toss us bone here will ya." A little while later, I was sitting eating breakfast and chatting with a couple of other RMH moms when an amazing thing happened. One of the moms, who has preemie twins, was talking about what a miracle her babies are and then mentioned that her husband is a miracle too. He's a 28 year old survivor of.........wait....for....it...........Stage IV Neuroblastoma!!! I about fell out of my chair. Seriously, what are the odds??? Nice bone.

DESPAIR: But the very next day our hearts were broken once again by the terrible loss of 2 NB warriors. Two more in an agonizingly long list. We got to know Sydney Dudley and her wonderful family here in VT last Spring and Summer. She died very suddenly and unexpectedly and we are all in shock and disbelief. We will miss her beautiful sweet smile and the way she could make us laugh. (www.carepages.com and enter "sydneymarie") Sam Hutchinson we did not know personally, but followed his blog. Sam's parents are a force in the NB world and have worked tirelessly to fund Dr. Sholler's research and find new and better treatments for all our kids. (www.teamsam.com) Please pray for these families.

Once again, please remember that we do not tell Ryan of these losses. He did not know Sam, but was very fond of Sydney and would be heartbroken.

Please pray that this new study benefits Ryan. And keep all our Warriors and Angel families in your prayers as well. Please say an extra prayer for our NB friend Sal who is also blazing a trail as the first child on another new Phase I trial.

Love and "100% hope",

Norma and Paul

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NEWS BULLETIN FROM BoP:

Cookies for Kids’ Cancer has partnered with The Glad Company (maker of food storage bags & containers, trash bags, and plastic wraps) to further awareness and raise funds to support pediatric cancer research. As part of the spring campaign Glad will be running a national television ad campaign to encourage people to hold local bake sales. The commercial has been uploaded to YouTube so you can take a look at it www.youtube.com/gladtogive. The ads are running on channels like Lifetime Television, The Learning Channel, ABC Family, and others.

In May 4.2 million specially marked packages of Glad products will begin to ship to stores across the country. Glad will make a $1 donation to Cookies for Kids’ Cancer for every package purchased when the consumer goes online and enters the special code found on or in the package. Glad will contribute up to $200,000 to Cookies for Kids’ Cancer for this promotion. Based on its anticipated success the program will run again in the fall where the potential contribution will increase to $300,000. The fall promotion will include a celebrity component like it did last fall with Joan Cusack in an effort to create further awareness for our cause.

The commercial Glad is running is somewhat unprecedented as it relates to a large national brand openly supporting pediatric cancer on so many levels. I hope this is the beginning of a real change in the way pediatric cancer is viewed. Glad is truly helping pave the way for other large national brands to get involved in the fight against pediatric cancer.

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MARCH 8, 2010

I have unanswered prayers

I have trouble I wish wasn't there

And I have asked a thousand ways

That You would take my pain away

That You would take my pain away..... "Your Hands" - JJ Heller

What can I say? It wasn't the news we were hoping for.....again. Ryan's disease has progressed.....again. The soft tissue paraspinal tumor is bigger. Looking at the scan on the the computer it looked MUCH bigger. However, the written report put it at only .3 millimeters bigger. Strange the measurement was so small because it really looked like it increased much more than that. And also a few of the boney lesions show "increased uptake" as well. No new areas though. We're going to consult with their neurosurgeon here about that paraspinal tumor as it looks as though it's starting to worm it's way back into the vertebra, hence closer to the spinal cord.

The good news is that Ryan has been feeling great. His tummy and BPs have been good. It defies logic how good he looks and feels. This is, I think, his 4th progression since the Big Relapse of '08 which we've never been able to get much of a leg up on. It's been one step up, two steps back ever since then with this bleeping disease. We went to the movies Thursday and saw the Lighting Thief. There's a scene where Percy cuts off the many heads of a Hydra monster, only to learn that when you do that, two more grow back. As I watched it, it reminded me of the neuroblastoma monster, the way it can mutate to become bigger and meaner. (The Hydra or Lernaean Hydra was a many headed monster in Greek mythology which terrorized visitors near the lake of Lerna in Greece. Killing the Hydra proved to be quite a challenge, as two heads would grow back whenever one was cut off. Hercules seized upon the idea of cauterizing the neck before the new heads had a chance to grow, ultimately defeating the monster as part of a series of tasks he completed which are collectively known as the 12 labors of Hercules. The Hydra is such an enduring mythological figure that the term “hydra” is sometimes used to describe a challenge which seems to keep getting bigger and harder to handle, no matter how hard someone tries to metaphorically behead it.) We have to figure out how to behead our monster once and for all. Hey, if Hercules can do it, why not The Amazing Super Ryan??

All we can do is keep trying. Dr. Sholler has a new Phase I trial that just opened. It's a drug (DFMO) that's been used in adult cancers but never in children. He started it today. Ryan is the first pediatric patient to ever receive this drug. It should be easily tolerated and not hit his blood counts too hard. His platelets are still on the low side (45 today) so we need to give his body more time to recover. We haven't had the best of luck with new trials, but certain of other options we already know he doesn't respond to and/or would likely either be too harsh or simply don't have great track records either. This drug looks good in the lab, but we know that doesn't always translate to success in the clinic. After the first 21-day cycle, they add in etoposide which, in the lab, showed the best synergistic response. We just have to hope and pray. SOMETHING has to work for Ryan. At times it feels like we're in a free fall and the shute isn't opening.......and we're frantically clawing at the emergency shute now.

Dr. Sholler also said there is a personalized medicine trial on the launch pad....maybe April. They would be able to test agents on Ryan's particular tumor to see what works on his disease, which is often different than what works on another child's disease. Every case is so different, which is one of the many maddening things about NB.

The "HOPE" pendent I have is....well.....pretty cheap. Maybe $3.00. I noticed the other day that the silvertone has worn off in places. It's looking pretty beat up. I was thinking today how metaphorically appropriate that seemed. BUT, I went to the hospital gift shop and found another bright shiny new one to replace it. "100% hope". Gotta hang on to it!

Lastly, to those of you who were inspired to match Ryan's piggy bank donation to BoP, we thank you from the bottom of our hearts. What Ryan, his friends who are currently battling NB, plus all the future children yet to be diagnosed need the most is a cure for this monstrous disease. We are grateful for every dollar donated that brings us closer to that day. I don't know what the final total will be, but at last check, we were at $3,600.00!!!!!!! Wow!

Thank-you for all your prayers for Ryan as well as all our warriors and angel families. Please pray that we get some bang for our buck with this new treatment....with NO STUPID SIDE EFFECTS!!!!!

Love and "100% hope",

Norma and Paul

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MARCH 2, 2010

Hi everyone,

Well it's that time again. Scan time. Scanxiety is at a fever pitch. Sooooo much bad news in the NB world lately. Regardless of what Ryan's scans say, we need to come up with a new treatment plan. We're assuming that Ryan's episodes of major vomiting and ridiculously high BPs in Jan. and Feb. was a reaction to the chemo cocktail he was getting. This "now what?" phase is always such fun. At this stage of the game, there is never a clear and obvious good choice. Eeny, meeny, miny mo. Blindfold ourselves and pin the tail on the protocol. Door No. 1, Door No. 2 or Door No. 3. You get the picture.

How much his BP issues will limit our already limited choices is another wild card. Also how much we want to preserve his quality of life versus trying to actually gain ground on the beast is another consideration. We don't feel like we've been making the right choices in recent months. Obviously, NK cell, which we had SO much hope for, turned into an unmitigated disaster. This last cocktail sent him into "hypertensive crisis" per the admission papers. Of course no other kid has had the reactions to these treatments that Ryan has had. He's just in his own little category. The consent forms list the "likely" side effects; "less likely" side effects; "rare" side effects and now they'll have to add the "nobody on the planet but Ryan" side effects. *sigh*

On the plus side, Ryan has been feeling great and his BPs have been behaving nicely. Still on BP meds of course, but no spikes. And he's still talking about the Harry Potter exhibit. :-)

Tomorrow Ryan and I head up to VT and his MIBG scan will be Thursday morning. I'll chat with Dr. Sholler in the afternoon and hopefully she'll tell me his stable and she has this great idea for treatment.

In the last several days I've heard of several instances of people who don't know us personally and are very far removed from us, yet somehow Ryan's story made it's way to them. And they wanted to let us know that they and their prayer groups are praying for Ryan. He has quite and army of prayer warriors there, far and wide, fanning the flames of hope! Thank-you one and all.

Ryan Moment: He emptied out his piggy bank yesterday. Counted up $85.89 which he INSISTED be donated to Band of Parents. Ya gotta love him!

I guess that's it for now.

Love and "100% hope",

Norma and Paul

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FEBRUARY 26, 2010

Hi everyone,

RYAN IS FREE!!!!!!! He was discharged yesterday morning. Yes, I did say morning. THAT's a first. It's usually a day long process of paperwork and waiting, waiting and more waiting. Gotta love the ICP. They got it done in record time. It even left us time to got down to the 6th floor playroom so Ryan could hang out with his friends for a bit before we headed home.

And guess where we went bright and early this morning. HARRY POTTER!! FINALLY!! The folks at the Museum were kind enough to open the exhibit early just for Ryan. We we warmly greeted and the boys presented with a few gifts including Harry's broom, the Firebolt, which Ryan insisted on carrying with him thru the whole exhibit. The exhibit itself was spectacular and Ryan, Matthew and their friend Duncan thoroughly enjoyed it (me too). When asked if it was as good as he had expected, Ryan replied "better!". Matthew especially enjoyed the part where you could pull up a Mandrake and hear it squeal. My favorite part was Hagrid's hut. Ryan's favorite part was "ALL OF IT". We spent some time in the gift shop of course. There was a display of all the various characters' wands. Ryan......Harry Potter aficionado extraordinaire.....very astutely noticed that a display wand was mislabeled as Hermione's when it wasn't hers. He brought it to someone's attention and this egregious error was quickly rectified. Whew! The only disappointment was that they were out of Berty Bots Every Flavor Beans. Oh well. We owe a HUGE, HUGE, HUGE thank-you to Jon, Lauren and Erin at the Museum who went out of their way to make sure our visit was fantastic. And again, thank-you to everyone who called the Museum on Ryan's behalf. We are so blessed that so many people cared a whole lot about making one little boy happy. MISSION ACCOMPLISHED!!!!!!!!!!

There's a possibility we'll be heading to VT next week for scans and to discuss treatment options. Nothing scheduled yet though.

Thank-you for your prayers for Ryan, all our angel warriors and angel families.

Love, and "100% hope",

Norma and Paul

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FEBRUARY 24, 2010

Hi all,

Ryan had a GREAT day yesterday. No nausea, good BPs and even ate some breakfast, lunch and dinner! The team is now trying to back off on some of his meds and switch others from IV to oral. They even stopped the around the clock mega dose of one of his BP meds and will just give it as a "rescue" if he spikes. They did put that patch on the other day that I mentioned in the last update. It could be that the patch is what's responsible for the big improvement, or it could just be another one of Ryan's now famous out-of-the-blue magical turn arounds. Who cares. We'll take it.

He even got to go off the floor for a couple of hours yesterday to visit the playroom on the 6th (oncology) floor. Since this is the ICU/ICP floor there is no playroom. Obviously, kids here are usually too sick to leave their rooms so not much need for one. I thought perhaps they'd move us out of here since he's not needing such a high level of care any longer, but there's really no place to go. Oncology is full and as of yesterday, there were only 5 available beds in the entire hospital!! Sad to think so many kids are sick. :-( We went back down to the playroom again today and they actually had a patient in one of the treatment rooms they're so pressed for space!

So far, today has been as good as yesterday. Which means there's a chance we MAY go home tomorrow!! Could Harry Potter be a possibility after all???? Please, please, please, please!!!! I have heard of no less than 3 instances where calls have been made to the Museum of Science on Ryan's behalf, asking for their help to make this happen. Thank-you to Mark G., Paul E. and Erica here at Children's. And we are so thankful for the the folks at the Museum who are bending over backwards to try to accommodate Ryan and our situation. They must think this is one special kid to have all these people calling for him.....and they're right!!

That's all for now.

As always, thank-you for your prayers for Ryan and all our warriors and angel families.

Love and "100% hope",

Norma and Paul

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FEBRUARY 22, 2010

Hi everyone,

At this time 3 years ago, we were in the ICU at NY Presbyterian Hospital after Ryan's brain surgery. Wow. It was not much before Ryan's brain relapse that there was no treatment for such a relapse and it meant certain death in less than 6 months. And here he is, 3 years later, still plugging away. So even though we are once again in a hospital, and it sucks, we are thankful. And we cling to the hope that new treatment(s) for systemic relapse will emerge and be just as successful. SOON. Which brings me to.......

I watched the national news tonight. Guess what some unknown buyer just paid ONE MILLION dollars for at auction. A rare copy of the first comic book featuring Superman. One million dollars.....for a comic book. That's one more for my wish list......that someone with a million (apparently extra) dollars could think of something more worthwhile to blow it on. "Hmm, I have a million dollars I don't need. What should I do with it??? Think, think, think......"

Ryan had a REALLY good night last night. Around 7p.m. he went for a walk - 1 1/2 laps around the unit. Got back to the room and he announced he was hungry!! Music to my ears! So he had a few bites of a croissant and sipped some fruit punch. It wasn't much but it stayed put. BPs were good and stayed good overnight. Then this morning his "morning sickness" came back and he's been pukey off and on today. Only had 2 or 3 high BPs during the day but since about 6 pm they've been creeping up again. He's on a very high dose of the IV BP med (25 mg which started out at 3 mg on Wed.). They now say they want to put him on a patch that gives a slow steady release of medicine to help with the blood pressure and the nausea too.

He also had a head CT today. With his particular symptoms they always want to rule out a brain relapse or bleeds. It looked fine.

And lastly, I keep forgetting to say a thank-you to the mystery person who had an Au Bon Pain gift card sent up to our room when we were inpatient in January. Whoever you are Mr/Ms. Anonymous, thank-you!!

As always, thank-you for your prayers for Ryan and all our warriors and angel families.

Love and "100% hope",

Norma and Paul

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FEBRUARY 21, 2010

I wish.....kids didn't get cancer.

I wish.....our kid didn't get cancer.

I wish.....the media devoted as much air time and print time to pediatric cancer as they do to a billionaire hedonistic, narcissistic golf pro.

I wish.....the major cancer societies and the NCI considered life years saved, not just number of people affected, when allocating research funds.

I wish.....every parent of healthy children would watch their sleeping children tonight and try to imagine a bed forever empty.

I wish.....every parent of healthy children would watch their sleeping children tonight, close their eyes and ask themselves "which one could I live without".

I wish.....people who can find hundreds of dollars to spend on the latest electronic gadget or thousands for granite countertops, wouldn't always have to think twice about donating to research.

I wish.....every PERSON, parent or not, could spend a day or two in a pediatric oncology unit.

Because then....everyone would get it.....and be outraged....and demand action.....and then.....there would be no need....to wish.....for any of the previous wishes.

Yes, I'm in a mood.

Ryan had a bumpy morning with puking and high blood pressures but the afternoon so far has been okay. Paul stayed with him all weekend and got him up walking, so that's good. The doctors now want to start TPN (IV nutrition) since he hasn't eaten since last Tuesday. He had TPN back in November/December. Have mixed feelings about it as we thought it made his nausea/vomiting worse and when we stopped the TPN his tummy was much better. We'll see. They said they'd stop it if it made things worse but they concerned about his nutrition. He does need some nutrition in him.

It looks like our trip to VT this week isn't going to happen. I spoke with Dr. Sholler last night and she is going to come up with another treatment plan since this one obviously didn't agree with him! Still holding out hope for Harry Potter.

More of our friends relapsed this past week. This beast is relentless.

Please keep praying for Ryan and all our warriors and angel families.

Love and "100% hope",

Norma and Paul

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FEBRUARY 19, 2010

Hi,

Ryan had a pretty rough night. His blood pressures continued to be quite high. They've not only upped the dose of that fast acting BP med (by A LOT), they also are giving it around the clock instead of "as needed" since "as needed" pretty much turned into around the clock! His nausea/vomiting were pretty bad too. Again it was only dilaudid (a narcotic for pain, which he does not have) that helped settle his stomach. After he demonstrated this phenomenon about 3 or 4 times, the docs finally said "uncle" and added that around the clock too. I felt bad for his night nurse (who was FANTASTIC) and who I don't think sat down once all night and spent about 85% of the night in our room. She was sooo nice and went to bat with the docs a few times to get something he needed. I'd mention to her something I remembered he'd been given during the last admission for this, she'd look it up in the computer and sure enough it was there. Go talk to them and come back and tell me they're adding it. HELLLOOO?? Is not looking up this stuff, which is meticulously recorded, a "no-brainer"? No, I guess relying on my memory is better. Those of you who know me best know how scary a thought THAT is!!

So Ryan also needed a platelet transfusion yesterday which was hard to get started since they were needing to give so many other IV meds. They didn't want to start a 2-hour transfusion and have his BP spike or vomiting get worse and then have to stop the transfusion. He finally got it in the wee hours this morning and now that the dialudid and BP meds are being given regularly, I'm happy to report that Ryan has had a pretty good morning with minimal nausea and no vomiting. His BPs have been great all morning too. Believe me, there were some pretty scary numbers overnight, so that is a HUGE relief. He is right now getting a red blood transfusion which runs for 4 hours so hopefully his blood pressure will hold. The downside is that it all makes him very sleepy so he's "out" most of the time.

And as I could have predicted, they're talking again about doing yet another brain MRI like they did last month when this happened......and several others they've done ever since his BP issue started in November. Whatever.

Renal people come by to talk about the blood pressure every so often too. A lot of the same conversations over and over. Ya-da, ya-da.

I guess that's it for now.

Keep praying!

Love and "100% hope",

Norma and Paul

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FEBRUARY 18, 2010

Greetings from Boston Children's Hospital, Intermediate Care Program unit.

Yep, Ryan was admitted again yesterday for excessive vomiting and high blood pressure (sound familiar??). He had been doing pretty well since we'd been home, but woke up Wednesday morning and promptly vomited. Despite giving him IV anti-nausea stuff, his nausea/vomitting persisted. Our VNA nurse came at 9 a.m. to draw labs and check his BP and found the BP quite high even though he'd had his blood pressure medicine an hour earlier (and kept it down). I let Dr. Sholler know and she had us go ahead and give him his evening dose at around noon. Our nurse came back and rechecked it later and it was still high and getting higher, so we were told to head to the ER.

Deja vu from a few weeks ago. Rjyan's vomiting got really bad and they continued to have trouble controlling his BP in the ER even after being give a couple of rescue doses of a fast acting BP med. At fist they said we'd be admitted to the ocology floor as usual, but later decided the BP was serious enough to send us to the Intermediate Care Program unit which is a step down unit from ICU (for you Sloan veterans, it's our version of the POU). He had a pretty miserable night with nothing seeming to control the nausea/vomiting which was getting worse and worse. Around 5 a.m. I remembered that during our last inpatient in Jan. they had given him some dilaudid for pain he was having. It had the unexpected side effect of alleviating the nausea/vomitting. This happened twice. So since he was having a lot of neck pain, presumably from all the retching, I asked if he could have dilauded, explaining how it had helped with the vomiting before. They were pretty skeptical but finally relented. He was FINE after that. No pain, no vomiting, no nausea and his BPs came down. He had a great morning catching up on sleep. This afternoon however he went down hill again with lots more vomiting and his BP going absolutely haywire. Waaaaay high....he kept setting new records...the most recent being a eye-popping 153/125. He's gotten I think 3 more rescue doses of the fast acting BP med in addition to the regular stuff. If it comes down at all, it's short-lived. They gave him a 2nd dilauded which indeed alleviated the vomiting again but the BPs have not come down to normal yet.

G-R-R-R-R-R-R-R-R-R!!!!!!!!!!!

And where should we be right now?? At the Museum of Science enjoying the Harry Potter exhibit. This makes our 4th failed attempt so far. I promised Ryan I would get him there before it closed (end of next week). I DID A PINKY SWEAR!! I MUST NOT FAIL!!

Pleeeease pray that all this resolves SOON and we get out of here.

Quick "Amazing Super Ryan Moment" to share before I forget. The other night we were watching American Idol together. One of the contestants they mentioned was named "Hope". Ryan turned to me and said "When I grow up, if I have a daughter, I'm going to name her 'Hope'. And if I have another daughter, I'm going to name her 'Faith', cause that's pretty much what my whole life has been about." Somebody pass the tissues.....

BTW, I'm not sure but he might not appreciate me sharing that little story, but how could I not??? So maybe don't mention it if you're talking to him.

Gotta run. I'll update as I'm able. My laptop is in the shop and there's no computer for me to use on our floor. I'm sneaking down to another floor to send this.

Keep praying!

Love and "100% hope",

Norma and Paul

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FEBRUARY 15, 2010

Hi all,

I guess many of you did not get the last update of Feb. 4th. My e-mail decided to flip it's lid and tell me most of my addresses were invalid and it wouldn't send. Hopefully, that won't happen this time. If anyone is really bored and wants to go back and see that one, it's on his site at for-ryan.org.

Anyway, Ryan and I returned from VT this past Saturday after his 3rd round of Velcade/oral etopiside. Dr. Sholler added a 3rd agent this time - SAHA (aka vorinostat - sp?). Something he's never seen before, so hopefully he'll get a response. SAHA is administered orally for 5 days, then 2 days off, then another 5 days. We got late start by 4 days since the hospital pharmacy had to order it.

It was an up and down week for him. Ryan started the chemo on Friday the 5th and was fine over the weekend. We went to the movies and saw Avatar. Then Monday evening he started getting a fever and vomited once. The fever was never quite high enough to warrant heading to the ER but Dr. Sholler saw him in clinic the next day and gave him a dose of IV antibiotic just in case something was brewing. His counts were holding on pretty well except for platelets which were dropping like a rock. They started out at 104,000 on the Friday we began chemo, dropped to 44,000 by Monday and 17,000 on Tuesday. So on Wednesday he got platelets and more IV antibiotic. Thursday he felt great and we saw another movie, The Blind Side. But Friday he woke up pukey and stayed that way until Saturday afternoon, which made for a fun ride home. Yesterday morning he puked once but has been good since. Let's hope that's the end of it. We are SOOOOO hoping this isn't the beginning of another long episode like a few weeks ago that landed him in the hospital. We're also hoping he feels good this week so we can FINALLY get into the Museum of Science to see the Harry Potter exhibit Ryan has been so anxious to see and which closes at the end of the month (we're back in VT the last week in Feb). We had tickets bought twice before and had to miss it first due the hospital stay and again this past week as we were in VT getting platelets and feeling yucky. So we'll try again this week.....school vacation week.....just what I was trying to avoid.

So now he's done with the Velcade and etopiside. Since he had been nauseous and vomiting, Dr. Sholler decided to give him a break and skip the final day's dose of SAHA. So he got Saturday and Sunday off, and we'll restart today for the next 5 days. We've been keeping the IV hydration going day and night thru this morning to catch him up and keep him from getting dehydrated.

He has scans scheduled for Wednesday, Feb. 24th and assuming all is at least stable, Round 4 will start at the end of that week.

So Superbowl fans, did you know that Ryan helped the New Orleans Saints win??? We were in VT watching the game, rooting for the Saints (sorry Colts fans). Remember that disastrous interception Manning threw - the death knell? Well, just a few minutes before that I casually mentioned that we needed Manning to throw an interception. Ryan got right on it. He blessed himself, said a little prayer....and guess what....YUP.....INTERCEPTION!!! I said "Ryan, you did it!" His eyes bugged out and a big smile crossed his face. (I keep asking him, "hey, have you brought up the cancer thing lately???") I'll admit there were probably thousands of Saints fans praying for the same thing, but I'm giving the credit to Ryan!!!

And on a much more somber note, it has been a very sad and emotional couple of weeks in the NB world. We were heartbroken to learn that our friend Alina, who Ryan had gone thru 3f8 treatment with at Sloan, just relapsed after being clear and off treatment for over 4 years. I would often go to Alina's site when I needed a pick-me-up. To read about how great she was doing always gave me - and a lot of other people - hope that the beast can be beaten. Her mom has always been so supportive when we've hit rough times. To think of them having to enter treatment again makes me so angry!.

We also lost 3 warriors.

Adrianna Cavanaugh, only 3 years old and diagnosed less than a year ago. As battle-fatigued as we are after 6 years, this reminds us how luck we truly are.

Erik Ludwinskifirst fought and beat NB in 1991-92 as a child, but relapsed 13 years later at age 20 in 2005. I know most of you will not visit any of these sites, but if you take the time to scroll back a few pages and read some of Erik's own journal entries, you can't help but be amazed and inspired by this remarkable and spiritual young man.

And also Santi Wall . Santi turned 9 in January. He bravely battled not only NB, but also cystic fibrosis. His dad beautifully relates Santi's warm heart and courageous spirit in his updates. Scroll down for the English.

Even though you do not know these families, a few kind words in the guestbook are always welcomed and appreciated, even from strangers. Please keep all of these families in your prayers. And as always, thank-you for your prayers for Ryan.

Love and "100% hope", Norma and Paul

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FEBRUARY 4, 2010

Hi all,

Sorry for not updating sooner.....just haven't felt like it. But it's mostly good news. After a LONG day of waiting for paperwork and straightening out an insurance issue with his prescriptions, Ryan was finally released from the hospital this past Friday. There is still no explanation for this bout of nausea/vomiting (what's new?). No idea what triggered it. No idea what made it stop as abruptly as it started. We came home with IV hydration but all his other meds are oral and he's been fine since we've been home. I do have the IV versions if need be, but hopefully we won't need them. He is eating and drinking better.

He had several tests while inpatient. Abdominal x-ray was normal. Brain MRI was normal. They also did two scans of his kidneys because his BP spiked up again. One was a renal ultrasound and the other is called a DMSA. The DMSA looks at the "meat" of the kidney to see if there is any scarring or damage that might not show up on other scans and which could account for the elevated BP. Both the ultrasound and the DMSA were normal. So, once again, no idea why his BP is high (again - what's new?). They increased his dose of BP medication and it's being checked by the VNA nurse 2x week along with labs.

Ryan did manage to have some fun while inpatient. Once he was feeling well enough, he was able to go to the playroom and really enjoyed hanging out with other kids. He especially enjoyed the time he spent with the volunteers from Hole in the Wall Gang Camp who come in every week. GREAT guys that Ryan knows both from the hospital and from Camp.

Tomorrow (Thursday) we head to VT for Round 3 of the Velcade/etopiside. We were supposed to have gone last week but obviously it got cancelled when Ryan got so sick. I think it's the 3rd week in February that he will have scans again.

I guess that's about it.

Please keep our buddy Jack Bartosz in your prayers. This week he began the NK cell trial after recently relapsing.

Oh, there are so, so many struggling right now. Too many to list. Please keep praying that new and better treatments will become available soon for Ryan and all these brave warriors.

As always, thank-you for your continued prayers for Ryan.

Love, and "100% hope",

Norma and Paul

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JANUARY 24, 2010

Hi everyone,

Well, Ryan's two weeks of puke-free bliss have come to a screeching halt. Ryan completed his 2nd round of Velcade/oral etopiside on the 16th. He seemed to do fine with it. A day or 2 after completing it though he started to get a little nauseous and pukey. He was feeling really yucky this past Wednesday. We were heading into the Jimmy Fund Clinic for blood and platelets anyway. They gave him some IV anti-nausea stuff (which I had run out of at home) and the blood products. He slept most of the day at clinic but woke up a new man. Felt great. Had a good dinner at home and even went to his guitar lesson for the first time since October. We got our supply of IV anti-nausea stuff replenished so I could give it at home if need be. Thursday he's pukey again. Friday is worse. The IV meds aren't helping at all. His VNA nurse comes for a BP check on Friday and it's elevated for the first time in a long time. Overnight Friday and Saturday morning he's miserable and - not to be gross - but his his vomit now looks like there's some dried blood in it. We ended up in the ER of Children's by Saturday afternoon. In hindsight, I probably waited too long. I kept waiting/hoping for the sudden about-face he's been known to do and suddenly feel fine - like Wednesday. And also I was just SOOO loathe to walk into a hospital ER and risk being admitted. You sort of feel like a parolee who's broken parole and is being sent back to prison. Anyway, after a few hours in the ER he was indeed admitted. Despite having been given IV hydration at home, he was still very dry. Oddly enough, his labs were pretty good though. But obviously, they were concerned about the blood in his vomit (which stopped today - his vomit is back to a lovely green bile color). And also by then, his BP had spiked waaaaay up. Of course and as usual, there is no explanation for any of this. It's too far out from the chemo for the nausea/vomiting to be from that......which didn't even make him sick during the time he was taking it. His BP had been coming down so nicely in recent weeks that the doctor had halved his BP med dose and he was doing fine on that until this past Friday. Ryan, the Man of Mystery.

So now the battery of diagnostic tests has begun. He's already had an abdominal x-ray (normal). They want to do a renal ultrasound and a brain MRI. Those may happen tomorrow (Monday). Also on Monday I expect to see the GI folks and the renal folks.......so they can ask a lot of questions, order a bunch more tests......then tell us they don't have any idea what's causing any of this. Been there, done that. A lot. And I had just been thinking the other day that for the first time in several years, we may NOT meet all our yearly medical deductibles by February. Silly me.

Somewhat on the plus side, we were admitted to the transplant unit as there were no beds available in the regular oncology unit. The "plus" being that all the rooms are private. The "minus" being that he's not allowed to leave the room for 6 days except to go to/from tests. It's a precautionary rule to keep the transplant kids safe from anything contagious he might bring in from the outside world. So, no walking around the floor, not play room, etc. Not that he's up for either of those things right now, so it really doesn't matter. He had a good night last night (Saturday), slept well with no more vomiting. Today however he was sick a lot and they were still having trouble keeping his BP in check. This evening around 8:30 though he said he felt pretty good, was able to take some oral meds and then went back to sleep. We'll see what tomorrow brings.

So, you know the drill. Please pray for our boy. Please keep all our warriors in your prayers as well. The last couple of weeks have brought a lot of bad scan news for several of our friends.

Love and "100% hope",

Norma and Paul

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JANUARY 10, 2010

Hi all,

Well, since the last update a lot has changed.....for the BETTER! First of all, we decided on 12/30 to stop his overnight hydration on the off chance that, like the TPN did, it was making him pukey in the mornings. On 12/31 he vomited once. Aside from one CT contrast-related episode a couple of days ago, Ryan has not vomited AT ALL in 2010!!! It's like his body finally said "puking is just sooooo 2009". He's eating as much as we will allow.....we're still trying to keep his portions small but frequent till his tummy gets used to food again. He's drinking well. He feels 1000% better!! His physical therapy is going well and aside from losing 3 or 4 pounds, he's the old Ryan again!

On Jan. 5th we headed to VT for scans and bone marrows. His MIBG scan showed things as stable. We also did a PET scan, which he hasn't had since 2004. If you recall from an earlier update, with the PET the patient is injected with a radioactive sugar. The cells of the body absorb the sugar. On a PET image, healthy tissue appears less bright as it absorbs less of the sugar. Malignant areas use greater amounts of glucose and appear as hot spots on the PET images. So, a PET can tell us whether or not his cancer cells are using less sugar which indicates they are dying or the disease is there, just that it is matured and not "active". His PET scan did show less "active" disease than the MIBG. Not a ton less, but less is good, so we're happy with that. A few spots in his lower legs did not show up at all on the PET and others were fainter. The soft tissue tumor in his back still lit up brightly so that sucker is alive and kicking. I still want to talk to Dr. Sholler some more about it and understand exactly what this REALLY means in terms of his disease burden and just how much we can hang our hat on. Oh, but his bone marrows were positive for disease, so that was a bit disappointing. He hadn't had bone marrows done since before the NK cell therapy.

This past Friday Ryan started his 2nd round of Velcade/etoposide and so far, no nausea/vomiting like he had the first time. It was hard with the first round to distinguish between chemo nausea and the chronic nausea he had been having at the time, so we hope this means he won't get sick at all with this round. He continues the oral etoposide for a total of 8 days, which we can administer ourselves, and we returned to VT today for his Monday Velcade and will again next Friday for his remaining Velcade dose.

So, aside from steady snow coming down, our ride home Friday was going fine until about the halfway point. That's when I realized I had forgotten to stop by the hospital pharmacy to pick up his etoposide before we left. AAARRRGH!!!!!!!!!! Now, do I turn around and drive 1 1/2 hours back to the hospital and then turn around again and drive 3 1/2 hours home OR do I try to get them to redo the prescription in Boston so I can pick it up at Dana Farber and have the much shorter ride home from Boston. I opted to try for the latter thinking it would be quicker and easier. WRONG!!! I'll spare you the details of the next more than 4 (yes 4) hours of trying to accomplish this "easier" task, but suffice it to say I was duly punished for my stupidity at forgetting to pick it up. Unfortunately, so was Ryan, a VT Nurse Practitioner, as well as a Jimmy Fund nurse and Nurse Practitioner who tried to help and who ultimately got the prescription filled at........are you ready for this.......a CVS across the way from Dana Farber. Don't ask. We finally left Boston at 5 p.m. in Friday night rush hour traffic which was exacerbated by of all things, Fenway Park gridlock (who would expect an event at Fenway Park in January?) and we finally arrived home at 6:45 p.m. - having left VT at 11:30 a.m. *sigh*

Today we drove back to VT for tomorrow's treatment. Today, January 10, 2010, is the 6th anniversary of the day we first heard the word "neuroblastoma" and entered a world we barely knew existed. And Ryan's normal, carefree childhood evaporated. No, not going to throw a pity party here. Had enough of those the last couple of months. Focusing on the positive this time. We keep praying for our "miracle". Albert Einstein said: "There are two ways to live your life. One as though nothing is a miracle. The other as though everything is a miracle." The miracles are there if we stop to think about it. Sometimes - too often lately - the setbacks and losses overshadow the blessings and miracles. BUT........Ryan is still here. Six years later. Almost 3 years after the first of 3 relapses later. 3 disease progressions after that later. Though he has his bad days, he's a pretty happy, loving, sweet kid. He not only survived a pneumonia that could have been fatal, he recovered in a week. If not for the bald head, no one looking at him would think he was sick. That's a pretty impressive (just partial) list of miracles. I believe many more will be added in 2010.

"Some see a hopeless end, while others see an endless hope..... - Author Unknown.

Oh yeah. Almost forgot. Happy New Year!

Love and "100% hope",

Norma and Paul

P.S.

With the holidays, recent storms and cold weather, blood donations have dropped off dramatically. If you can, try to get in to Boston Children's to donate blood or platelets. Kids still need blood transfusions despite weather conditions and holidays. All the info you need is here:Parking is free!!

If you can't make it into Boston, consider your local blood donor center. .To find one near you go HERE

Also, here's a New Years Resolution for you.....one that doesn't involve dieting, exercise or quitting anything......resolve to register with the National Marrow Donor Program (now known as Be The Match)!!

This Website answers all your questions about bone marrow donation (separating myths from facts) and lets you register on-line and order a kit by mail. With the kit, you just do a cheek swab and send it back in the postage pre-paid package. What could be easier??

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DECEMBER 31, 2009

Hi everyone,

Ryan is doing okay. He completed his round of chemo on Christmas Eve. He tolerated it pretty well, though it did make him more pukey and his counts dropped a bit. He only needed one platelet transfusion though, and even that was borderline necessary. We just wanted to be sure he would be okay over Christmas and the weekend so we tanked him up. He continues on the IV hydration overnight plus IV anti-nausea meds, usually just in the morning. He generally feels pretty good in the afternoons and evenings and eats a little bit of dinner. He also continues with the blood pressure med.

Christmas was good. We were HOME and got to spend time with both sides of the family. Santa brought Ryan Legos and several of the Harry Potter collector's items he wanted. Santa also came through for Matthew who finally got the long-coveted and endlessly-begged-for cell phone!! He spent most of Christmas Day texting dad and me. I told him to get it out of his system that day because after that, he's NOT to text us when we're in the same house!!!!! I think we're only one or two generations away from losing our ability to vocalize.....our vocal cords becoming as needed as our appendix. Shriveled up and useless, no one will remember what they were once for. But I digress. The boys also got new razor scooters which Ryan will get to use at physical therapy. And Matthew was also very excited to get clothes. Yes, a 12 year old boy excited about getting clothes for Christmas. Shows you how much he's grown.....he and I are dead even now. *sigh* All that plus new Wii games, a cache of iTunes and Guitar Center gift cards for the boys and it was a pretty good Christmas!!

But now it's back to reality. Next Tuesday we will head back to Vermont for scans and bone marrows. Assuming all is at least stable, Ryan will start the 2nd round of velcade/etoposide on Friday, January 8th. Sunday, January 10th, Ryan will begin his 7th year battling the Beast. More than half his life. Way more. I was in line at CVS the other day listening to this mother relate to her friend the high drama of her kid getting tubes in his ears for his chronic ear infections. You'd think he'd had a heart/lung transplant! I almost burst out laughing (that weird psychotic kind of laugh that makes people look at you funny and slowly back away). I managed to suppress it though. What I wouldn't give for good old fashioned ear infections!!

Well, as we said about 2007 and 2008, we're mighty happy to put 2009 in the rear view mirror. Not really looking forward to 2010 all that much either come to think of it. Sort of feels like we just made it out of a mine field, somewhat bloodied but still standing, only to look up and realize there's another huge mine field in front of us to navigate through. Kinda takes the "Happy" out of "New Year". But as much as it sucks, we realize we are lucky to still be in the fight. Far too many new Angels this year.

And really, I suppose 2009 wasn't ALL bad for us. There was May. Florida, Discovery Cove, dolphins, Ryan's birthday. Yup, May was good!!

So while I'm increasingly uncertain of it's value, I'll go ahead and ask for your prayers for Ryan. What the heck. He's not listening to me, maybe He'll listen you all.

Yes, I know I'm in a funk. I'll get over it.

And as a reward for muddling through the above, I'll leave you with a MUCH cheerier sentiment, courtesy of another (waaay more well-adjusted) cancer mom I know.

"My wish for you is: 12 months of LUCK, 52 weeks of PEACE, 365 DAYS OF WISDOM, 8760 HOURS OF SUCCESS, 525600 MINUTE OF LOVE and 31536000 SECONDS OF HAPPINESS. I just wanted to wish you all a Great & Fantastic New Year. MAY ALL YOUR WISHES COME TRUE!!!"

Love and "100% hope" (give or take),

Norma and Paul

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DECEMBER 19, 2009

Hi all,

In our last episode of "As Ryan's World Turns" his tummy issues remained the same, his blood pressure issue remained the same, he was still on TPN, he'd had an upper endoscopy procedure and we were waiting to hear from various doctors about an NB plan moving forward.

This past Monday we were at the Jimmy Fund Clinic and met with Ryan's doctor. We decided to stop his TPN because TPN itself can cause nausea, so we thought that since his nausea/vomiting is mostly in the morning and follows 12 hours of TPN, perhaps it was now doing more harm than good. So since stopping it, I'm happy to report that Ryan's "delayed gastric emptying" issue seems to be improving!! He is still nauseated and pukey in the mornings, but NOWHERE NEAR as much as before. He is usually okay in the afternoon and evening. He sometimes eats a late lunch and usually eats some sort of dinner. When he does eat, EVERYTHING STAYS DOWN!!! When he does vomit in the mornings it's bile, not food. Now why he is still nauseous in the mornings is a mystery (like everything else with him), but improvement is improvement and we'll take it! Friday the GI doctor called and told us that all the cultures and biopsies done during the endoscopy were all negative. Good news, but doesn't help solve the mystery.

His high blood pressure remains unchanged. We held a dose of his BP med before his endoscopy because he was having anesthesia and sure enough, after the anesthesia drugs wore off, his BP jumped up. It was up again in clinic this week when they happened to take his BP right when he was due for his next dose. Once again, no one has any idea what's causing that either!

Also on Monday during our meeting, Dr. Shusterman presented a few different options to treat the NB. It's tough to find something that is low toxicity yet strong enough to actually keep things in check. We've been waiting to get his other issues resolved first, but it's been way too long and we needed to do something now before his NB had a chance to take off. We also talked to Dr. Sholler in VT on Wednesday and got her thoughts. As for NY, despite being told Ryan would be discussed at Tuesday's meeting this week and despite e-mails to all 3 attendings, NO ONE got back to us. NOT happy about that at all. Anyway, after debating the various options presented by Boston and VT, and absent a clear and obvious best choice, Paul and I went with our gut and opted to go with Dr. Sholler's suggestion of Velcade and oral etoposide. When we were in VT last, Ryan had done Velcade with oral cytoxin, which kept him stable. Since he's had TONS of cytoxin I asked if the Velcade could be combined with something else and Dr. Sholler suggested the etoposide and said we could start it on Friday (yesterday). We thought we could do this in Boston at first, but in the end Dana Farber didn't feel there was enough data using this combination with kids to feel comfortable with it's safety. SO, at about 4:00 p.m. on Thursday it was apparent that if we wanted to do this, we'd be traveling to VT on Friday, which we did. He got his first dose of Velcade which is an IV push and we came home with his oral etoposide which he takes daily for 8 days. Paul and Ryan will return to VT late on Sunday and go in to the clinic on Monday for his 2nd Velcade dose, then come home. Usually there is a 3rd dose but that would fall on Christmas, so we're obviously skipping that. We hope to get some scans scheduled in early January to see where we're at. He never did have bone marrows done in NY in November because he was vomiting too much to be anesthetized. His platelets have been dropping over the last week and worries us that perhaps marrow disease is taking over and not allowing normal cell production. Scary thought. Don't want to go there.

The long drive back and forth notwithstanding, it was really great to see the folks at the Burlington Ronald McDonald House again. Very, very nice staff and volunteers. The House is nicely decorated and Ryan got to choose a gift from under their Christmas tree. And boy were the counters piled high with donated cookies and goodies!

Not sure if we'll update again before Christmas, so we will take this opportunity to wish everyone a very Merry Christmas. We are so, so grateful that we will all be together and at HOME. Please say a prayer for all our little warriors who will be far from home and in treatment during the holidays. And of course please remember all our Angel families in your prayers as well. We know far too many who will be spending their first Christmas without their child. And many, many more enduring yet another holiday season with a broken heart. Amidst all the hustle and bustle, take a moment to count your blessings.

As always, thank-you for your prayers for Ryan.

Love and "100% hope",

Norma and Paul

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DECEMBER 12, 2009

Hi everyone,

Haven't updated in a while. No news usually means good news but right now it just means......no news. Things are pretty much status quo with Ryan. Stomach issue still there, still nauseous and pukey although 2 days this week were pretty good. Two of the anti-nausea meds were switched to IV instead of oral since they weren't staying put long enough to work so we thought maybe that was helping but yesterday and today were back to the usual nausea/vomiting again. The blood pressure issue is also still there; still on TPN and a variety of anti-nausea meds. Our house is littered with many large boxes of medical supplies and our fridge is crammed with TPN and other meds.

Today Ryan had the long-awaited endoscopy procedure where a flexible scope was inserted though the mouth and down the esophagus to examine his stomach, take a look around and take biopsies for testing. This was quite a project to get scheduled since the anesthesia people did not want to anesthetize Ryan so soon after his pneumonia. They require 6-8 weeks after pneumonia to do anesthesia. This week is just about at the 6 week mark. I'm not positive but I don't think they usually do it this way, but Ryan's was performed in an OR. Aside from a little irritation to the throat, he felt okay afterwards. All went smoothly (for a change). Hard to know what to wish for here. On the one hand you want them to find something so the mystery will be solved and they'll know what and how to treat it. But on the other hand, you don't want them to find something really bad. This being Ryan, and if his recent laundry list of mysterious, unexplainable symptoms and problems is any indication, I have a feeling they'll come back and say they found nothing and we're back to not knowing what the heck is going on with his stomach or why. Some test results should be in early next week, others later next week. Visually, all they saw was a couple of ulcers in his lower esophagus which are likely just a symptom of all the vomiting and some redness/irritation in his stomach I'm told didn't look like anything much. But they took samples from both areas to culture and see if there's any infection going on.

Ryan also started started physical therapy this week to try to improve his strength which is very diminished right now. It's going well.

And then there's the cancer thing. Remember that?? We have no plan moving forward on that front, which makes us nervous. This coming Monday we meet with his doctor in Boston to see what options she can suggest. We also e-mailed NY asking for their ideas and the reply (as I expected) was that they would discuss it at next Tuesday's weekly meeting and get back to us. Last week I e-mailed Dr. Sholler in VT asking for her thoughts on a treatment plan but have not heard back. So, we wait.

Ryan's spirits ore okay for the most part. Yesterday as he was vomiting yet again, he asked "Is this ever going to end?" Good question. This afternoon for the first time since we've been home, he had a chance to have one of his good friends over to hang out and he really enjoyed that.

Lastly......as everyone is gearing up for holiday shopping, please give the gift of HOPE and keep Band of Parents in mind. The easiest way to help and not spend any more than you would have anyway on gifts, is to do your on-line shopping through iGive.com and designate Band of Parents as your charity of choice. iGive donates a percentage of your purchase price at no cost to you. It's free to join and easy to use. Also, you can give delicious cookies to friends, neighbors, co-workers, etc. (without having to bake them at this busy time of year) using Cookies for Kids Cancer. Again, just be sure to designate Band of Parents from the pull down menu on the check-out page where you enter your billing information. It's under "additional information" and is easy to miss. You can choose from Triple Chocolate Chunk, White Chocolate Macadamia Nut, Chunky Peanutbutter, Chocolate Almond Coconut Crunch, Chunky Chocolate Chip, Chewy Oatmeal Raisin and Liam's Lemon Sugar. And don't forget that Glad is matching all cookies sales during November and December!! There's also the BoP Shop where there are great holiday cards and items for sale. Easy links for all of these are on the BoP website .

Please keep all our NB warriors and Angel families in your prayers.

Thank-you for your prayers for Ryan.

---

DECEMBER 1, 2009

Hi everyone,

First of all, I'll apologize for my potty mouth in the last update. I was just so over-the-top, out-of-my-mind angry.

Second, we're HOME!!! We got home Friday evening. We spent the first half of the day at the clinic. Ryan was supposed to have had his bone marrows done but since he was still pukey, the anesthesiologist said "no" to putting him out. Too much danger of aspiration if he vomited while unconscious. And since he was pukey they gave him a couple of IV anti-nausea meds and let him sleep for a bit. Paul and I finally got a chance to sit down with Dr. Modak and look at the scans. The official report says some spots may show decreased uptake (i.e. look slightly fainter). But this would be minimal and certainly no where near what we needed. Towards the end of our meeting Dr. Modak made an interesting suggestion. He'd like to do a PET scan at some point soon. For the unitiated, with a PET scan, the patient is injected with a radioactive sugar. The cells of the body absorb the sugar. On a PET image, healthy tissue appears less bright as it absorbs less of the sugar. Malignant areas use greater amounts of glucose and appear as hot spots on the PET images. So, a PET can tell us whether or not his cancer cells are using less sugar which indicates they are dying. He said he's had kids who were MIBG positive but PET negative, meaning the disease is there, just that is matured and not "active". Once again, a faint glimmer of hope.

Since we've been released from the hospital, Ryan has continued to be nauseous and vomit quite a bit. His pattern has been that he wakes up very nauseous and vomits on and off most of the morning. In the afternoon he's much better, feels hungry and usually eats some lunch and/or dinner (small amounts). Unfortunately, it doesn't last and around bed time he is puking up most of what he's eaten. His stomach still is not emptying into his intestines. Yesterday we went to the Jimmy Fund Clinic for a check-up, labs, get his TPN set up with the local branch of the company and get an appointment with a GI specialist at Children's. We head to the Waltham branch of Children's later this afternoon for that appointment. Let's hope they have some brilliant ideas to get him on track. We're also going to get set up with physical therapy locally as his body got pretty weak from the long hospital stay and all the other crap he's been through.

Our Thanksgiving was a bit subdued. Ryan wasn't able to eat and none of us were in a particularly festive mood. I was still in my Angry Place. Out of boredom I went on Facebook and saw a post from another NB mom. I think the app is called "Messages from God" or something like that. This particular one seemed directed right at us. It said: "On this day, God wants you to know.....that tonight you can turn your worries to God, and have a good night's sleep. You've been worrying too much abut the future lately. So tonight, go ahead, put your faith in God, and just have a peaceful evening and a restful sleep." Not easy, but trying.

And on a bright note.... On Sunday Ryan was feeling well enough to go with us to see Matthew's first performance in front of a live audience with his band "Spazmonkey". His music school pulls together students who want to learn to play in a band and in addition to their regular lessons, they also do "rock school". They performed two songs. It was very cool. They were the first act and did a fantastic job. Matthew plays guitar and was outstanding!! Not a bit of stage fright. Just did his thing and was all smiles afterwards. We were so proud of him!!

Lastly......as everyone is gearing up for holiday shopping, please keep Band of Parents in mind. The easiest way to help and not spend any more than you would have anyway on gifts, is to do your on-line shopping through iGive.com and designate Band of Parents as your charity of choice. It's free to join and easy to use. Also, you can give delicious cookies to friends, neighbors, co-workers, etc. (without having to bake them) using Cookies for Kids Cancer.

Again, just be sure to designate Band of Parents from the pull down menu. And don't forget that Glad is matching all cookies sales during November and December!! There's also the BoP Shop where there are great holiday cards and items for sale. Easy links for all of these are on the BoP website at www.bandofparents.org.

Thank-you for your prayers for Ryan, all our NB warriors and Angel families.

Love and 100% hope,

Norma and Paul

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NOVEMBER 25, 2009

Hi all,

Okay, I'll start with the good news. Ryan was released from the hospital today......after 37 days!! He is feeling quite well. Last night he ate a good amount of dinner and held it down overnight. This morning he did vomit a bit but not too bad. We're actually wondering if the TPN (IV nutrition) is making him nauseous since he gets that for 12 hours overnight and he always seems to get sick now in the mornings. Anyway, we made it out of there by mid afternoon. He is still on the TPN so tonight supplies will be delivered to the Ronald and someone is coming to show us how to administer it. We'll go home with enough to last till Tuesday. Monday we head into the Jimmy Fund Clinic for a check-up, labs, etc. His blood and urine have to be monitored closely to make sure the TPN formula is correct and not throwing things off like his blood sugar and electrolytes. The other good news is that Paul and Matthew arrived last night. Paul stayed at the hospital with Ryan and I had a wonderful, uninterrupted night's sleep at the Ronald!

We will not be home for Thanksgiving. The logistics of getting the TPN set up at home with the holiday was too difficult. The Ronald puts out a lovely turkey dinner, so we won't go hungry. Ryan will go in for a check up at the clinic here on Friday as well as have his bone marrow biopsies done. We will plan on driving home after that.

Now for the bad news. Simply put, the fucking MIBG scan isn't any better. He went through 5 weeks of hell for nothing. I'll bet the ranch the bone marrows will still be positive too. So our Hail Mary pass fell waaaay short. Where do we go from here? No idea. We'll sit down and go over the scans with Dr. Modak on Friday but I doubt we'll leave with a plan. He'll probably tell us they'll talk about it at Tuesday's weekly meeting and get back to us.

In past years at Thanksgiving time I've rattled off a list of things we're thankful for. I'm sure in a few days they will come to me. Just not quite there yet. All I got now is two: One, we are thankful that this journey has given us the perspective to know what IS important and precious in this life and what ISN'T worth worrying about, whining about, striving for, or being in debt for. Two, and most importantly, we are thankful we are still in the fight and, with so many of our friends suffering the pain of an unimaginable loss, realize we are very lucky to at least have the opportunity to fight on.

Oh, and a pox on any of you parents of healthy children who don't hug the stuffing out of them after you read this.

Love and still with "100% hope" (though really pissed off at the moment),

Norma and Paul

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NOVEMBER 24, 2009

Hi all,

Boy, what an up and down few days it has been. Last Friday was a GREAT day. After Ryan's upper GI test in the morning (which showed no physical reason for his problems), he felt great. ALL DAY. No nausea, no vomiting. The NG tube suction was off all day. They started the clear liquids through the NG late in the afternoon and he seemed to tolerate it fine. It was started at a VERY slow rate of 5 mls (about a tsp.) per hour. He was so much more himself. Up and around walking, spending time in the playroom and just being his old self. We thought this is it!! He's turned the corner and we're on our way!! But no. First thing Saturday morning he wakes up puking. They stopped the feed for a while, gave some nausea medicine and waited a bit. Turned the feed back on and an hour later he puked again. So no more feeds for the rest of Saturday and we were back to nausea meds that make him sleepy - he slept almost all day. When he was awake he was nauseous and pukey. Sunday was much the same. SOOOOOOO MAD!!!!!!!!!!!!!!!!!!!!!! The bright spot of the weekend was a visit from his cousin Jocelyn and her friends who came by with a bagful of goodies and hung out with us for a while. Thanks guys!

Friday night they did his brain MRI and Sunday the spinal MRI. Both reports look fine in that they show no CNS issues responsible for all these problems. Unfortunately though, the existing disease he had in his spine still shows up, so we know we did not hit a home run with the NK cell therapy. *#$&@!!!!

Yesterday the doctors that come around on the inpatient side "rotated" so we have a new attending - DR. KUSHNER - his own doctor! Yeah!!! He totally agrees that once we're done with scans here, we should definitely seek out a peds GI specialist and he said he'd talk to the ones across the street again to see if they can help at all. He came back to our room again last night and said they're stopping two of the meds that are supposed to stimulate the gut because they are obviously not working. Also stopping the Pedialite thru the NG tube because that is obviously not working either. AND he said that we can follow up on the GI issues AT HOME at Boston Children's and....drum role please.....the goal is.....to get out of here on Wednesday!!!!!! Some logistics to work out there, especially since he'd have to continue on the IV nutrition once released so we most likely won't make it all the way home for Thanksgiving, but hopefully at least to the Ronald and OUT OF THIS PLACE. AND Dr. Kushner gave Ryan permission to eat some real food last night. He opted for Skittles. They didn't taste right to him though, so he switched to a Kit Kat bar and ate a whole Halloween mini sized one. Also ate about a handful of Goldfish crackers and a few Sour Patch gummy things. All over the span of about 1 1/2 hours last night. So far, everything has stayed down!!!! Do we wish Dr. K had been the attending before this??? YUP! Oh, well.

Ryan's MIBG scan is scheduled for 11:00 a.m. today. As I said above, we already know from the spine MRI that he still has some disease. As disappointing as that is, we are still hopeful that the MIBG will show at least some improvement. Pray, pray, pray.

We may or may not get MIBG results today, but I'll do a quick update when we do. This afternoon is when the NB team has their weekly tumor board meeting so I hope they at least have the results to discuss and form a new plan for treatment.

Paul and Matthew arrive later today. Yea!!!

Love and "100% hope",

Norma and Paul

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