Hi everyone,

Wonder of wonders, Ryan was released from the hospital today!!! A full 2 or 3 days earlier than usual or expected!!! And thank-you Uncle Bob for the ride home on very short notice!

Ryan is on oral antibiotics until his ANC comes up a bit more. Other than that, we just have to go to the Clinic on Thursday for a follow-up and probably more platelets. Since we were released so soon, we COULD have made it to NY for the work-up but unfortunately, our slots had already been filled with other patients so we'll go next week (9th thru 11th).

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

Love,

Norma and Paul

---

MARCH 29, 2008

Hi everyone,

Ryan was admitted to Children's Hospital late Wednesday evening. He spiked a fever and with no immune system, that is an automatic admission. He's been on IV antibiotics as a precaution and as of this writing, nothing has grown out of his blood cultures which is VERY good. He's feeling okay although sleeping more than usual. He had his favorite nurse today, Elizabeth, so he's a happy camper. As anticipated, he's getting lots of transfusions - 2 platelet and 2 red blood so far this week and we expect he'll need platelets again tomorrow and into next week. We were supposed to head to NY next week for scans but that will have to be rescheduled, hopefully for the following week. These admissions for fever typically last a good 7 or 8 days. UGH!

Please pray that his counts recover soon(er).

Please pray also for NB warrior Austin Melgar . He is unresponsive and the doctors say there is no hope. Austin's parents and 4 siblings are at his side praying for a miracle. Please pray for peace and strength for this family.

And another NB friend, Emily Adamson as well who relapsed again not long ago. They too are praying for a miracle.

On another note -

Update on the Conquer Childhood Cancer Act:

The Conquer Childhood Cancer Act is a bill that would allocate 150 million dollars to childhood cancer research over the next 5 years. It was considered in the HELP (Health, Education, Labor and Pensions) committee and was passed unanimously, without amendment, and after minimal discussion or debate. This brings us closer then ever to passage of this legislation.

The bill now needs to either pass by unanimous consent by the full Senate (which is unlikely) or to be voted on by the full Senate. If the latter happens, we will need 60 yes votes in order for the bill to pass the Senate.

PLEASE continue to reach out to those Senators who are not yet co-sponsors to secure their support. If you check the list below, there is an instant link to e-mail them a letter. It will take LESS THAN 5 MINUTES.

35,000 US children are in active cancer treatment and 2,300 will die. This is unacceptable when you consider we've spent 500 billion on a war overseas. 150 million over 5 years for the Conquer Childhood Cancer Act seems like a "drop in the bucket" in comparison. On the plus side, we have 52 wise senators supporting the CCCA. We need 8 more to reach 60, a majority to help pass this landmark legislation. Please honor Ryan, those children that have been fighting for their lives for years, and those many who have earned their wings by taking 5 MINUTES to e-mail SENATORS that are NOT yet CO-SPONSORS. If this bill is not passed by 2008, it dies and we're back to square one.

Here is a list of states that need sponsors...Alabama (2), Alaska (2), Arizona (2), Colorado (2), Florida (2), Idaho (2), Iowa (2), Kansas (1), Louisiana (1), Maine (2), Mississippi (1), Missouri (2), Montana (2), Nevada (1), New Hampshire (2), North Dakota (2), Ohio (1), Oklahoma (2), Oregon (1), South Carolina (1), South Dakota (1), Tennessee (2), Texas (1), Utah (2), Virginia (1), West Virginia (2), Wisconsin (2), Wyoming (2).

If you check the list below, there is an instant link to e-mail them a letter. You simply insert prewritten "talking points." It will take LESS THAN 5 MINUTES.

Information about those Senators who are not yet co-sponsors.

Send a letter to your Member of Congress urging them to vote to pass the Conquer Childhood Cancer Act

If you have a CaringBridge site, please copy and paste this info to your site. If you know someone who lives in one of these states, copy and e-mail it to them.

Did you know......

The National Cancer Institute's federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers COMBINED received less than 3%.

Each child in the US diagnosed with cancer receives approximately 1/6 of the federal research support allocated to each patient afflicted with AIDS. Yet in 2004, 48 new cases of pediatric AIDS were diagnosed vs. more than 12,000 pediatric cancer cases.

Okay, soap box is back in closet....for now. ;-)

Thank-you!!

Norma and Paul

11 more days till Opening Day at Fenway........

---

MARCH 17, 2008

Hi all,

Ryan has been doing really well. He ended up not needing any transfusions last week - although he just barely squeaked by on the platelets. Though they were high enough not to need a transfusion, they weren't high enough to start chemo so we were delayed a week. Today they JUST met the minimum level so chemo was started. It's all done outpatient so we'll be driving into the Clinic every day this week. Since his blood counts are nowhere near as high now as when we started the previous round, he'll no doubt need more transfusions this time and probably need them sooner than usual as well.

Hate to be a broken record but Children's is in need of platelet donations if anyone can make it in. The body only hangs onto them for a day or two so Ryan will be chewing through them again at a pretty good clip.

More Info, Many, many thanks to everyone who has donated in the past.

Thankfully, Ryan has tolerated this chemo cocktail very well. This time last year he was in the midst of his worst stretch ever suffering the awful side effects from high dose chemo and the cranial/spinal radiation. I remember him being so weak from vomiting and diarrhea that he was like a wet rag and Paul had to carry him to and from the car. He stopped eating and eventually lost 12 pounds and ended up inpatient for ages recovering. Nothing like warm memories of seeing your child's head bolted to a table for radiation, hunched over a basin vomiting bile while sitting on the toilet with uncontrollable diarrhea and so emaciated he almost looks like a holocaust survivor. UGH! Enough of THAT stroll down memory lane!

ANYWAY, right now he has his sights set on baseball. He talked me into buying him a batting helmet, batting gloves, a bat, balls, and some sort of batting training thingy. The helmet is metallic red. I told him they'll be able to spot him from the Space Shuttle. He said he's going to blind the pitcher. Thinkin' strategy already! So in case you haven't figured it out, I can't seem to say "no" to him these days. BTW, the batting training thingy has a picture of NY Yankee Derek Jeter on the box so I had to promise to throw the box away IMMEDIATELY! Bad Karma.

Oh, and 22 more days till Opening Day at Fenway!

Lastly, please keep fellow NB warrior Austin Melgar in your prayers. He is having a VERY rough time right now with neurological issues - as if cancer isn't a big enough problem to deal with.

And as always, thank-you for your prayers for Ryan. Scans are still scheduled for the 1st week in April so KEEP PRAYING!

Love,

Norma and Paul

Happy St. Patrick's Day!

---

FEBRUARY 27, 2008

Hi,

WE ARE HOME!! WOO-HOOO! We got home late Sunday afternoon and have been enjoying sleeping in our own beds and being all together again.

Ryan is feeling great. His ribs don't hurt at all unless he laughs a lot. We're starting up tutoring again to try and keep him up to speed with school work.

He completed his chemo in NY without any problems. We were actually shocked at how good his counts were all last week. Last Monday his platelets were 107,000!!! They haven't been that high in a year! I even questioned if they had the right kid's labs.......these MUST be someone else's. Even on Friday after 4 days of chemo his platelets were 105,000. But, as they say, all good things must come to an end. Now they're dropping like a rock. Monday of this week they had plummeted to 36,000 and yesterday to only 16,000. Plus his hemoglobin had dropped as well so we were at the Jimmy Fund Clinic yesterday for blood and platelets. Undoubtedly, we'll be back again on Friday for the same and continue this scenario for the next 3-4 weeks.

On that note, I would like to again put out a plea to anyone willing and able to trek into Boston Children's Hosp. to donate platelets. The platelets Ryan received yesterday were from Rhode Island and I was told there has been a severe shortage lately. I've been asked in the past if donating right at Dana Farber was just as good since that's where the Jimmy Fund Clinic is. Actually, blood donated there goes to adult patients only. Pediatrics gets their blood products from Children's.

You can get more info on donating blood on Their WEB SITE

Once Ryan recovers from this round of chemo, we will do another here in Boston......probably in mid-March (as dictated by his blood counts of course). After that, we head back to NY the first week in April for a complete work-up in preparation to HOPEFULLY be put back on 3F8 antibodies. Since this tumor was removed, we assume Ryan is NED again. PLEASE PRAY THAT THESE SCANS IN APRIL ARE CLEAR!!!!

We would like to again thank everyone who signed Ryan's guestbook these past couple of weeks. He REALLY likes reading his messages.

To anyone who will be talking or writing to Ryan, please don't mention the passing of Harrison and Eden. We don't tell Ryan when one of his friends passes away as he would be crushed. If he asks why he hasn't seen someone in a while, we just tell him that they went home and they don't have to go to the hospital anymore.

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

Love,

Norma and Paul

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FEBRUARY 19, 2008

Hi everyone,

Ryan is doing well. He started his chemo yesterday and so far so good.......no side effects. We anticipate going home this weekend if all goes according to plan. He also had a follow-up with Dr. LaQuaglia, the surgeon, and he seems pleased with Ryan's progress. He says Ryan should be ready and able to play Little League in the Spring, no problem (hear that Coach Bill?). Another x-ray yesterday shows improvement with the lung issue. Today is the last day of the weaning off of the morphine. He'll depend on Tylenol now but his complaints of pain are few and far between anyway. He's slowly starting to eat a bit more too which is good.

Although overall things are going well with Ryan, today was a very emotional day for us.

Okay, I always hesitate to share these stories and I don't do it to be depressing. It's partly because it's therapeutic for me in a way but mostly because these kids matter and EVERYONE should care about their suffering and loss. But if you're not up for it, stop reading now.

This morning e-mail brought us the sad news that Harrison Nicholswho I've mentioned in recent updates, had passed away yesterday. I just saw them last week while we were inpatient. Harrison had bounced back from the brink more than once and I guess we all just assumed he'd keep defying the odds. He was an amazing spirit who battled this disease for the last 6 years. He, his mom Gina and Grandma Rose were a common site at the Pediatric Clinic and an inspiration to many. Gina always wrote very eloquently about their journey together on is site.

Another unexpected blow came later in the day when we read that our sweet little friend Eden Brunscow. also passed away yesterday This one really blind-sided us. They have been in Vermont for treatment and things seemed to be improving a bit. However, we didn't know that on Friday they learned the disease had traveled to her lungs. Eden was a unique and endearing little girl who absolutely LOVED Halloween. I think she was already dressing in orange Halloween garb by the end of August. She and Ryan hit if off. They shared butterfly tagging together here at the Ronald the last 2 (or is it 3) Septembers. Yesterday I spent time in the lobby gift shop buying the last few items for a package of goodies we were going to send to her in Vermont, not knowing she was already gone. They're still in the bags.

This disease sucks!

---

FEBRUARY 15, 2008

Hi everyone,

First of all, a HUGE thank-you to everyone who sent Ryan Valentine's Day messages......via guestbook, e-mail, snail mail, and express mail. He has thoroughly enjoyed them all.

Lots of smiles!!

Ryan was finally released from the hospital yesterday. He's doing quite well though he still needs to be on IV antibiotics because of the positive blood culture. But we're managing that just fine at the Ronald. Even though it means getting up at midnight, 1 a.m., 6 a.m. and 7 a.m., it stills beats being in the hospital. And there are no words to describe how happy I am to NOT have to use a shower that is used by about 20 or so other parents!!!!

So after a bit of confusion and differences of opinion (and apparently NUMEROUS e-mails amongst the NB team), the Powers That Be finally came to a consensus. Ryan will start chemo next week.....Cyclo/Topo which is what he was getting before his surgery. Chemo was a given, but the exact cocktail it seems was a point of some discussion. We will stay here in NY to do it since the surgeon wants to follow-up with him anyway next week. My understanding is that he will get 2 rounds of this chemo and then go back on the 3F8 antibodies. We can probably do the second round of chemo at home. It's nice to have a plan!

Paul and Matthew are driving down to NY today. Since it's school vacation week next week, Matthew will stay here with us in NY but Paul will have return home on Sunday. I hope the playrooms here at the Ronald and at the hospital have lots of sibling activities planned!!

Thank-you for all your prayers for Ryan.

Love,

Norma and Paul

---

FEBRUARY 13, 2008

Hi,

We're still inpatient.

Today they made another attempt to drain the fluid around his lung, this time ultrasound-guided to try and see the right spot better. However, they weren't any more successful than the other day.......only got another 10cc's. Apparently, what's there isn't exactly liquid anymore. It's more gel like now so trying to do a needle aspiration is like trying to stick a needle in jello and draw it up (the doc's analogy, not mine). So, I'm told it will just have to resolve on it's own over time. It's no longer affecting his comfort level nor his oxygen levels so they're not too worried about it......I guess.

He had been off oxygen altogether until early this morning when he had a coughing fit. Not to be gross but it was a very gunky cough. He needs to be able to get rid of the gunk but he can't get enough force behind it to do it. Consequently, it was stuck in his throat and made him feel like he couldn't breath. Scared the CRAP out of him. The nurse had to put the oxygen back on him because the levels did drop quite a bit. He was too scared to go back to sleep so he lay awake for about an hour until he passed out from exhaustion. Fortunately, his levels came back up a few hours later. He's feeling pretty good right now.

Although he hasn't had a fever in a couple of days, one of the blood cultures they sent off when he did have one came back positive so he's got some kind of infection somewhere. He's on a pretty powerful IV antibiotic to deal with that. My understanding is that once they're comfortable that the antibiotic is working and at the proper level, he can be discharged and I can administer the antibiotics at the Ronald. All his other meds are now oral so that's not keeping us here anymore. His pain level is MUCH improved though he's still getting oral morphine every 6 hours (or maybe it's 8 hours.....I forget).

I think they may soon run out of reasons to keep him here. Most of what's going on now can be dealt with outpatient. I'm going to be cautiously optimistic and say we should be out of here tomorrow.

STILL waiting for someone from the NB team to tell us what's next so I have no idea when we'll be heading home.

Thank-you for your prayers for Ryan and please keep praying for his continued recovery.

Once again, a few more friends in great need of prayers.

Austin Melgar

Harrison Nichols

Eden Brunscow.

Love,

Norma and Paul

---

FEBRUARY 11, 2008

Hi everyone,

Sunday brought more improvement in the pain department. They stopped the IV pain meds yesterday except he could still hit the button and give himself a "rescue" if needed. Otherwise, he's been on oral pain medication. Just a few minutes ago they stopped the IV pains meds altogether. We'll see how he does. He's been moving much better and needs less help getting out of and into bed.

The bad news is his stool culture came back positive for an intestinal bug called C-diff. They did move us to a private room on Saturday evening and he is confined to it because he's considered contagious. He's been running a fever too though today it seems to have gone away. Blood cultures were sent off but the fever could be caused by the C-diff. Also, the fluid around his lung has not gone away. Earlier this morning Dr. LaQuaglia attempted to drain off what was there but only got a small amount (10cc's). They did an x-ray right after so I'm waiting to hear how it looks.

He may be released later today or tomorrow, but it looks like we'll be in NY for a bit longer still. Dr. L. wants to follow-up with him later this week plus I'm waiting to hear from the NB team what treatment they want to start next and when. They have their big weekly pow-wow on Tuesdays so I'm hoping to hear the plan on Wednesday.

Check out the following ESPN link.

Fellow NB warrior Liam is profiled. NASCAR fans might be particularly interested.

Speaking of sports, the Red Sox equipment truck left this past weekend for Florida! Forget robins, THAT'S my first sign of Spring! We're over the Patriots. And so what if there's still snow on the ground.......50-something days till Opening Day!

Please keep praying for Ryan's continued recovery. Once again, a few more friends in great need of prayers.

Austin Melgar

Harrison Nichols

Eden Brunscow.

Love,

Norma and Paul

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FEBRUARY 9, 2008

Hi all,

So there's good news and not so good news. On the good side, Ryan' was moved out of the POU yesterday to the regular floor. Good since it means he's improving, bad since it means no more private room! Also, his pain is better today. It was pretty bad yesterday but they had him doing a lot more moving around, walking, and breathing exercises, so all of that got him pretty sore. Today he seems to have turned a corner and is moving less gingerly and with less pain. He's still on the IV pain meds and sometimes needs to give himself an extra "blast" off the PCA pump but usually only when he's getting in or out of bed of going for a walk. Dr. LaQuaglia wants to start to wean him off the IV pain meds today and try to go to oral. His voice is stronger today too. There was a brief discussion of sending him home (Ronald McDonald House that is) today but there are a few issues yet.

Such as, he has fluid around his right lung still. He gets x-rayed every day and so far it hasn't improved. This apparently is common after his type of surgery and the hope is that his body will absorb it. He also is getting a diuretic to get him to pee it off. So far it hasn't happened so there's a possibility they may have to drain it off but first they're going to increase the dosage on the diuretic. Not sure how long they wait before the decision to drain it is made or exactly what it entails. I'm wondering if they maybe took the chest tube out too soon. Because of this fluid and the pain involved with breathing, he is still on oxygen most of the time. Not a mask, just that nasal thing. His oxygen saturation drops when it is removed. So when he goes for walks, someone has to trail behind him with the oxygen tank on wheels. Matthew had that job when he was here. Matthew also helped with breathing exercises like the pinwheel and also this other thing where Ryan has to exhale and then place a tube in his mouth and suck his breath in trying to do it hard enough to move a plastic indicator. All of these exercises are to get him to keep expanding his lungs more. One other issue that cropped up over night is diarrhea. Not sure what that's all about but they've sent a sample off to culture. I heard a rumor that that might put him on precautions and buy us a private room!!! He also isn't eating yet save for 4 Skittles last night and a few Starburst today......thanks to the Friday Night Treat Cart!

Oh, and he needs a blood transfusion today. His hemoglobin dropped to 8.2. Thankfully, his platelets are an acceptable 77..........nowhere near normal, but acceptable. I'm waiting for them to say they want to do another round of chemo again. It's been a month since his last round so I'm sure it's coming very soon.

Rest assured all requests for kisses for Ryan have been honored!!!

A short time ago we said good-bye to Dad and Matthew as they headed home. Hopefully we'll all be under one roof again soon.

Thank-you for your prayers for Ryan.

Love,

Norma and Paul

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FEBRUARY 7, 2008

Hi,

Today was overall a good day. He had kind of a rough night. He needed to use his PCA pump for extra pain meds several times and despite having one of those nasal oxygen thingys, at 2 a.m. his oxygen level dropped to the 70's (normal is 100) which had his nurse and nurse fractioned scurrying around getting another oxygen mask on him. The first one they tried didn't work and as they were getting the second one his level dropped to the upper 60's AND he vomited. But once they got the mask on things got back to normal (including MY heart rate and blood pressure).

He eventually went back to just the nasal oxygen. As the day worn on, things got better. They removed his chest tube which made him more comfortable and also removed the Foley catheter and heart monitor stuff. He obviously has significant pain but they've still got him on the IV pain meds and he's been doing okay with that for the most part. They also got him up out of bed and walked around a bit then sat in a chair for quite a while. Respiratory therapy came by to help him with breathing exercises which we have to keep doing with him throughout the day. He takes very shallow breaths because it hurts but it's important for him to keep expanding his lungs. He almost got moved out of the POU and to the regular unit but an x-ray this afternoon noted some fluid around the lungs. They think it will clear up but just wanted to keep him in the POU longer to keep a close eye on it.

Matthew got to see him today finally. He helped with some of the breathing exercises by holding this pinwheel in front of Ryan who has to blow hard enough to make it spin.

All the meds have Ryan sleeping a lot and since he doesn't have much wind, his voice is very weak. Still he has managed to charm a whole new group of nurses. They're amazed at how tough he is and how he doesn't whine or cry or complain. Of course!! It's The Amazing Super Ryan!!!

Thank-you to everyone who has sent their good wishes for Ryan. Several times today I've gone up to him and given him a kiss and told him it's from this person or that person. He smiles.

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

Love,

Norma and Paul

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FEBRUARY 6, 2008

Hi all,

Ryan is doing great.

They wheeled him away for his surgery at 12:15 p.m. and at 3:00 they called us up to talk to the surgeon. He said everything went fine. In the end he did not need to take the extra two ribs out. He took a long section of the rib where the tumor was..........he put up his fingers to show how long and I'd say it looked like about 6 inches or so. He also took some muscle and tissue from the surrounding area but none of the diaphragm. Initial look thru the microscope and that tissue looks clear. The pathology on the tumor takes a good week or more to come back. He said it looked like the tumor originated in the rib itself.

He was awake when we went in to see him in recovery. He's had some pain but not terrible. They gave him one of those PCA pumps so he can push the button for pain meds when he needs to. He's watching TV and dosing in and out. He even asked to sit up at one point so the nurse helped him do that and he managed fine.

We're stuck in recovery until a bed in the POU is available.............probably not till 8:00 or so they tell us.

That's about it for now. All in all, great news, especially that they didn't need to take as much "stuff" out as they originally thought. The Amazing Super Ryan does it again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thank-you for all the prayers!!!

Love,

Norma and Paul

P.S. About an hour after I posted the update last night, I found out that one of the other children I'd mentioned had passed away earlier. Please keep the Carter Moore family in your prayers.

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FEBRUARY 5, 2008

Hi Everyone,

Happy Fat Tuesday.

We all arrived in NY yesterday afternoon. There's something extra cruel about having to arrive in Giants country the day after their inexplicable win in the Super Bowl. We've had quite enough of seeing Eli Manning's goofy grin plastered on every publication in sight.

But enough of that. On to the medical stuff.

As you know Ryan's blood counts have been an issue for some time now. Though his platelets were high enough to ordinarily not need a transfusion, they were not high enough to meet the threshold for surgery so they went ahead and tanked him up anyway. He also got a transfusion of red blood as well since his hemoglobin had unexpectedly dropped too. His whit cell count also was not where they wanted yesterday so we gave him a shot of GCSF which stimulates white cells. Today they were fine.

Backing up a bit, we found out on Monday of last week that they decided not to do the intraoperative radiation after all. The radiation oncologist and surgeon met and decided that since the tumor is so close to the surface, the internal radiation might cause a problem with wound healing. The surgeon was also confident he could get everything out just fine so they felt it was unnecessary. They take an extra border of tissue around the tumor which will be tested for any stray cancer cells. If positive, they can redo the external radiation like he had before.

Surgery is scheduled for 11:00 a.m. tomorrow. We met with his surgeon, Dr. LaQuaglia, today to go over things. We were a little unprepared for how extensive the surgery will actually be. The tumor is behind his 9th rib. They are removing an area about 2" x 2". This includes the removal of a portion of 3 of his ribs (which is when my nausea hit). Those sections of rib will be reconstructed with synthetic materials commonly used in joint replacements. They'll also be taking a small part of the diaphragm. He will need a chest tube for drainage. I asked how long the procedure would take and his reply was "As long as it takes".

This area is very close to his scar from his original surgery back in 2004 so Dr. L. said he'd probably just continue the incision from there so Ryan will have an extra long scar now. From surgery Ryan will go to the Pediatric Observation Unit (POU) which is like ICU. Probably just for a night or two and then to the regular pediatric unit. Overall he'll be inpatient for about a week, obviously all depending how his recovery goes. He's always recovered really well from surgery in the past so hopefully The Amazing Super Ryan will this time as well. Oh, and just for giggles, they'll do bone marrow biopsies while he's under as well. He just had them at the beginning of January, but Dr. Kushner wanted them again.

We're really cringing thinking about the amount of pain he'll experience with this rib removal stuff. Cutting through muscle and tissue is bad enough but bone? UGH! At first the surgeon said they'd do an epidural until the nurse practitioner reminded him of Ryan's low platelets. Apparently, an epidural plus low platelets runs the risk of causing bleeding in the spine which is a whole other major problem. DON'T want to go there! So, he'll get regular IV narcotics.

Ryan is in good spirits. He got a look at his CT scan with Dr. L. today and heard most of what was going to happen. Didn't flinch. His only complaint has been that he won't be able to sleep on his side for a while.

So, yes, this all sucks. This poor kid has had to endure so much for so long. He deserves a break. We often feel like we're in a nightmare-ish game of Whack-a-Mole with this insidious cancer. Once you get here, it pops up there. BUT once again we have to balance that against the knowledge that it could be worse. Much worse.

There has been an avalanche of bad news in the last week or so in the NB community. Here's just a few. Please pray for:

Carter Moore. Carter was only diagnosed this past June. Recent scans showed so much progression that it shocked the doctors. In a matter of days he went from feeling fine to going home on oxygen with no further treatment options.

Courtney Saunders. Courtney was diagnosed the same time as Ryan, January of 2004. Her recent scans showed a new tumor around her aorta, not operable. She too is going home on palliative care.

Jack Brown. Jack received Christmas miracle back home in England when his scans were clear. Now new scans in NY show differently.

Eden Brunscow. MRI shows a brain tumor.

Ryan is tough, he has one of the best surgeons in the world and has about a zillion people praying for him. Please keep the prayers going! He will beat this again.

We will update after surgery tomorrow. Love,

Norma and Paul

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JANUARY 24, 2008

Hi everyone,

We are home after a week inpatient at Children's. On Wednesday of last week Ryan spiked a fever. With his white count non-existent, that's an automatic admission so they can put him on IV antibiotics. Fortunately, nothing grew out his cultures so there was no real infection. It took the whole week for his counts reach the magic number to be released. We finally busted out last night after several hours of me trying to find someone who would believe me that his blood counts met the new criteria for release that they adopted a couple of months ago.

At around 4:00 p.m. I was finally told "you were right". *sigh* He was sent home on oral antibiotics which are proving almost impossible for him to choke down (liquid, chalky, blecht!). Trying to get pill form.

It was a loooong week in the hospital and he did get weepy a couple of times saying he just wanted to go home. But, his favorite nurse Elizabeth took care of him part of the time so that was a bright spot.

Today we were at the Jimmy Fund Clinic for more platelets. Once again, thank-you to all who have and will be donating!! He has been chewing thru platelets at a pretty good clip. Hopefully that will start to turn around very soon since surgery is on 2/6.

We were supposed to have gone to NY earlier this week to consult with the radiation oncologist who will do the intraoperative radiation during his surgery but we got that moved to Mon. the 28th since he was inpatient.

Here are some of our NB friends who are in particular need of prayers of hope, healing and strength:

Harrison Nichols whose disease is progressing.

Austin Melgar whose disease is progressing.

Emily Adamson who is battling her second relapse and awaiting important scan results.

Owen Lea who has been in treatment for another relapse, cleared again from that, now has questionable scans.

Thank-you for your prayers for Ryan (and Matthew).

Love,

Norma and Paul

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JANUARY 15, 2008

Hi all,

Ryan is feeling great. We were at the Jimmy Fund Clinic yesterday for the first (of many I'm sure) platelet transfusions. Thank-you to everyone who has/will donate platelets at Children's!!! As of Monday his white count was low but not critically low. I'm sure by the end of the week he will officially be neutropenic and we will do our best to keep him infection-free.....and inpatient-free!!

Next Tuesday we leave for a quick trip to NY....one or two days....to meet with the radiation oncologist who will do his intra-operative radiation. Hopefully we'll leave with a good understanding of what it involves, side effects, risks and benefits, etc.

As of right now there is nothing scheduled the week of Jan. 28th so we should have that week home and to ourselves before heading back for his surgery. I think we leave on Feb. 4th for that. Also, as of right now the plan is to do another round of the same chemo right after surgery......depending how well he does. We plan on taking Matthew out of school and bringing him with us for the week of the surgery. I know he was glad he was there when Ryan had his surgery last February and we feel it's important for all of us to be together. Hope the school feels that way too!!

So, yes. Here we are almost exactly one year after his brain surgery and Ryan is having surgery AGAIN! We go back and forth between being so incredibly worn out, emotionally exhausted and just plain wishing it would all just go away to remembering how many parents we know who would give anything to still be in the fight 4 years later. "Lucky" is a relative term. The Amazing Super Ryan, as usual, just rolls with the punches and never seems to feel sorry for himself. I envision him being a motivational speaker or something like that some day! He does love to talk...... Once again I'm going to plagiarize another child's site. Sometimes another parent expresses something meaningful to us and does it so well that I just have to share it.

Our NB buddy Jack has had a long and very rough road. He is once again NED, thank God! Here is something his mom, Yvonne posted on his site:

Jack, like the many other children fighting this battle, has never ceased to amaze us, the pain they tolerate, the never-ending needles and infusions, the tiredness, the ansathetic, time after time, after time, biopsies, surgery, line renewals, chemo, radiation. The scans that require them to lie for 2-3 hours motionless while awake, infection after infection... but the love that shines through is like none that I've ever experienced. The gift of cancer is one that few can ever know....to spend so much time with one child, to know that child like no other, is a luxury that few parents will ever experience. To lose that child is a pain that few parents will ever have to endure.

In more philosophical moments, I have looked at this as a "gift" of sorts. The bond that we've forged with Ryan probably would never have been so deep and so strong in other "ordinary" circumstances. Ryan and I in particular have been joined at the hip out of necessity for four years now. His sweet and adoring ways just melt my heart.

As wonderful as that bond is, we sometimes feel guilty and wonder if Matthew feels like the odd man out. He's often on the periphery of our crazy existence. "Who's getting me off the bus?", "who's staying with me while you're gone?" "when can we have my birthday party?". His birthday was in October and we've yet to find the time to have his kid party. He brought it up again the other day and observed that he really didn't need any more presents and toys so maybe we could have a party and ask people to donate money to Band of Parents instead of buying presents for him. His friend Duncan did something similar for his birthday with donations going to the Victory Junction Gang. Cancer seems to have taught them both to look beyond their own wants for the greater good. Nice guys. Very nice!!

I usually end by asking for prayers for Ryan, which I know I can count on. Today I will instead ask for prayers for Matthew. Siblings are the forgotten victims in the pediatric cancer world. Matthew internalizes so we often have a hard time figuring out what he's thinking and feeling. He never really expresses how all this is affecting him, either because he doesn't want to burden us more, or he just doesn't know how to articulate such complex feelings and emotions. We wonder what layers of pain, sadness, jealousy, guilt, confusion and uncertainty about the future are piling up. As you pray for Ryan, please also pray that Matthew realizes that, despite Ryan needing more of our attention right now, he is every bit as loved and cherished as Ryan.......and that Paul and I remember, in the midst of all the turmoil and craziness, to show and reinforce that to him. Also, pray that the other adults in his life remain ever mindful of all he is going through and extend to him the compassion, patience and understanding he needs. Matthew too is being robbed of a "normal" childhood. Please pray that he grows up not damaged, but stronger for this experience, happy, healthy and well-adjusted.

Thank-you.

Love,

Norma and Paul

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JANUARY 8, 2008

Hi everyone,

We heard from NY yesterday. Ryan's surgery is scheduled for February 6th. The reason for the delay is that they also want to do intraoperative radiation (IORT), meaning while he is open on the operating table, they do spot radiation right then and there. The IORT part is difficult to schedule so Feb. was the earliest they could get it done.

Since it's been a full 4 weeks since his last round of chemo ended and it will be another 4 weeks until the surgery, doing nothing in the meantime is not an option. So in order to make sure his disease doesn't progress while we wait, he started another round of chemo today....same stuff as the last 2 rounds. We will do it here in Boston, outpatient. He tolerates it well but it slams his blood counts really hard.

His platelets were 52 today which was barely high enough to start chemo. Ryan will surely need LOTS of transfusions over the next 3-4 weeks, mostly platelets.

There is almost always a shortage of platelets so we ask that if anyone can possibly make it into Children's Hospital over the next few weeks to donate, it would be really helpful. Ryan has had to wait for transfusions in the past when there was a shortage and someone else needed them more. Donating platelets does take longer than whole blood (1 1/2 - 2 hours I believe), so calling ahead to schedule an appointment is recommended.

I know it's an inconvenience but while there's usually a short supply of blood products, there's never a shortage of need. Platelets have a very short shelf life, only 5 days so a steady supply is important. Please pass this along to anyone you may know who lives or works in/near Boston too.

The blood donor center is located at Children's, 300 Longwood Ave. Boston. The hours are Mon-Thurs. 9 a.m. - 7 p.m., Fri. 7 a.m. - 4 p.m.; call for an appointment at: 617-355-6677. Oh, and you get free parking at the Children's pkg. garage! There's also the Longwood subway stop on the Green Line nearby. You can get more info on donating at their web site.

THANK-YOU!!!!!

Love,

Norma and Paul

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JANUARY 4, 2008

Hi all,

Just a quickie (stop cheering).

Scans are done, most of the results are in.

Ryan's tumor is still there, visible on both the CT and MIBG scans. It is only slightly smaller.

We had hoped the chemo and radiation would shrink/kill the sucker but it didn't. Dr. Kushner wants to consult with the surgeon here early next week. He feels surgery is the probable next step. We are still heading home tomorrow (Saturday) and we will wait for a call about when to return.

Treatment beyond surgery is still unknown. The team will meet on Tuesday to discuss the options based on these scans.

The good news is that no other disease was noted, the brain MRI is clear, the spinal MRI is pending but we're not too worried as nothing in the spine showed up on the MIBG, bone marrows are still pending as well.

Two other kids we know here found out today that they relapsed. Please keep Kassidy Terrio in your prayers.

Also Kieran Hathaway appears to have suffered a brain relapse (www.carepages.com and type KieranClyde).

Thank-you for your prayers for Ryan.

Love,

Norma and Paul

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DECEMBER 30, 2007

Hi everyone,

Hey, how about those Patriots!!! We once again hit it lucky and were at the Clinic when tickets for last week's Pats vs. Miami game were available - luxury box no less!! To top it off, someone brought their Super Bowl ring in and let everyone hold it and try it on. Very cool!

Oh, by the way, 360 shopping days till Christmas!!

Well, as per usual, hours of wrapping was reduced to minutes of ripping. And happily, the boys both had a terrific Christmas. After a clinic visit Christmas Eve morning (more platelets) we all spent a quiet Christmas Eve together at home, just the 4 of us, watching Christmas movies. The calm before the Christmas morning storm! And boy, did Santa came through big time!! The much coveted Wii that was on Ryan's list made it under the tree. It was so funny Christmas morning as they ripped the wrapping paper off, then just stared in stunned silence for several seconds before squealing "WE GOT A Wii"!!!! It was like they didn't believe their eyes at first. THANK-YOU to Santa and his elves for making this happen. ;-) The boys have been enjoying lots of time together honing their Wii skills. It's so nice that it's school vacation and they can be together before we leave again.

So yes, it's back to reality. We are heading to NY on Jan. 2nd for scans. These will be the first set of scans since the mass behind his rib was discovered in October. Since then he's had 2 rounds of chemo and 12 days of radiation to the spot. Please pray that this mass is GONE and that the doctors come up with a great new chemo-less plan for Ryan's continued treatment. His counts are finally rebounding, except for those stupid platelets. He's been getting transfusions 3x/week still. The last one was this past Friday and we'll head to the clinic tomorrow (apparently in a snow storm) to check if he needs to tank up again before the trip to NY.

Perception: an attitude or understanding based on what is observed or thought As 2007 winds down, my recurring thought is "good riddance".

It was a horrible year for Ryan and our family and I was thinking that for the first time in many years, I might actually stay up till midnight just to watch it tick away. B-bye!! Conversely, I just read the update of a friend who lost her husband to brain cancer this past summer and even though it was an extremely difficult year for her and her children, she hates to see 2007 go explaining: "2008 is the first year Jim won't exist".

Many NB parents updating their sites are happily remembering 2007 as a great year when their child finally attained (or maintained) NED status. Some, like us, faced relapse. Still other NB parents spent their first (or second or third...) Christmas without their precious child.

I would like to take a moment to honor the courage and resiliency of all our NB warriors like Ryan still in the fight - and the loving families who support them - as well as remember those we lost in 2007. They DESERVE to be honored and remembered. They touched and continue to touch so many lives and inspire many with their courage and dignity in facing this horrible disease. Here are but a very few of our newest angels: James Runde, Grace Oughton, Lucas Tran, Nathan Gentry, Lillie Boyte, Penelope London and, husband and father, Jim St. Pierre.

2008 will hopefully bring HU3F8 and other new treatments for neuroblastoma. Band of Parents will continue fundraising. For those of you interested in the details of the fundraising efforts and your amazing support, the Band of Parents account has over $1.2 million received. This does not include approximately $300,000 raised by the Loneliest Road bike ride, $240,000 raised by the cookie sales, $500,000 donation directly to MSKCC for the Band of Parents and additional money reserved in other foundations for the project including the CNCF Band of Parents Fund. This is truly amazing for an organization that did not exist six months ago and only began serious fundraising in September.

Word has started to trickle in to us that 2nd, 3rd and 4th generation e-mails about Band of Parents, forwarded from this one to that one, have inspired donations from people we don't even know. "I sent an e-mail to so-and-so who sent it to so-and-so....." Thank-you for continuing to spread the word. It has indeed helped.

And, as always, thank-you for your prayers for Ryan and all our NB warriors.

We wish everyone a happy and HEALTHY New Year.

Love,

Norma and Paul

Below is a poem I saw on another NB site and just had to share. You may consider it a "downer" but it very eloquently sums up our world.

I hope you never have to hear the words, 'Your child has cancer.'

I hope you never have to hear, 'the prognosis is not good'.

I hope you never have to prepare them to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.

Have them look at you with fear in their eyes and say, 'Don't worry Mommy, everything will be okay.' I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the 'cure' you pray for slowly take away their identity, as they lose their hair, become skeletal, swell up from steroids, develop severe acne, become barely or unable to walk or move, and look at you with hope in their eyes and say, 'It's going to be okay, Mommy.'

I hope you never have to stay in the hospital for weeks, months or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a Mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, 'there is nothing more we can do.'

I hope you never have to watch a family wandering aimlessly, minutes after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see your child's head bolted to a table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles,35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, 'It's going to be okay Mommy.'

I hope you never have to face the few friends that have stuck by you and hear them say, 'Thank God that is over with,' ...because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to 'normal'

While living in mind-numbing fear that any one of these tests could result in hearing the dreaded words...

'The cancer has returned' or 'the tumor is growing'.

And your friends become even fewer.

I hope you never have to experience any of these things,...Because...only then...

Will you understand....

Written by: Carol Baan

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