Ongoing updates of the Relapse episode: This page is appended as new material arrives : check back often!
DECEMBER 8, 2008
Hi everyone,
So after waiting for what felt like FOREVER for Ryan's scan/bone marrow results, we ended up getting partial news that is partially good. Dr. Kramer's e-mail came today late this afternoon and said: "MIBG is significantly improved but not 100% clear. Bone marrow biopsies negative, aspirates not read yet. Looking much better all around. Will get back to you this week with recommendations."
MIBG significantly better - good news. Not perfect, but good. We'll take it, though part of me is astounded that anything could survive the assault of chemos it got hit with. Bone marrow biopsies negative - also good but they were negative last time. It was the aspirates that were positive for disease (2 out of 4 sites). So we still wait to hear about that. If they're still positive, that would be significant since one or two remaining boney spots can be radiated, but bone marrow cannot. Ryan is still needing platelets, though he went one whole week in between transfusions this last time. Point being, chemo is not an option if his platelets are too low. It's already been 5 weeks since his last treatment and that's a long time.
I feel like I should be happier, but I'm somewhat disappointed. I was so hoping for a home run which would give us more time to plan our next move. Every decision we make from here on out will be more critical than the last and we're so afraid of making the wrong choice, which is pretty easy to do when there are absolutely NO clearly correct choices. Just the randomness of Door #1, Door #2, or Door #3. Do we stick with Sloan no matter what? They're the ones who cleared him in the first place and have gotten him thru his 2 other relapses. It would be hard to leave that "comfort zone" of familiar faces and surroundings and the level of trust we have with them. Do we venture off into uncharted territory at another facility in hopes of hitting on something he hasn't had before and might just work (or not).
Back in late 2004 when Boston had no curative options for us, they questioned whether we wanted the "inconvenience" of traveling "all the way to NY" for treatment. I distinctly remember telling Ryan's doctor "I don't care if we have to go to Pluto"! Today Ryan went to school for the first time since his relapse. He came home and said they were studying the planets in science. Matthew asked what planet he was doing with his group. He said "Pluto". Hmmmmm.
We need LOTS AND LOTS of prayers for guidance. To put a wrong foot now could be disastrous.
This past weekend the Ronald took families to Radio City Music Hall to see the Rockettes and the Christmas Spectacular. Exactly one year ago we were in NY and got to see that show. We spent time that evening with Zachary Morris and his parents whom we had gotten to know over many NY trips. He did not have a web site so it was hard to keep up with him. We learned this morning that Zachary became an angel a few days ago. Please say a prayer for his family.
Not this has anything to do with NB but I just wanted to pay a little tribute. Tonight I learned of the passing of an old friend. My first boss actually. Frank was an "old time" boss. The kind that could actually sit at any of the dozen or so desks in the department and do the job as well as anyone. The kind that would defend and go to bat for his employees with the higher ups - which he did for me once when I made a BIG mistake. The kind that you actually WANTED to come along when you all went out after work. The kind I still exchanged Christmas cards with every year even though I worked for him over 25 years ago. Rest in peace Frank.
Thank-you for all your prayers for Ryan. Please pray that his bone marrows are negative.
Love,
Norma and Paul
DECEMBER 6, 2008
Hi everyone,
Just a quickie. I've been getting some calls inquiring about scan results. Ryan had his bone marrows, brain MRI and MIBG scan this past week. The only result we have is a CLEAR brain MRI. We left NY Friday afternoon hoping for some more news but there was none. As soon as we get a call, we'll update.
Given that most are facing tough financial times, I want to offer a simple way for folks to continue supporting Band of Parents. It's simple and FREE...just do your usual online shopping (Christmas and otherwise) by going through iGive.com
We've raised almost $6,000 for Band of Parents in less than a year just doing our usual shopping. Here's all you do.....
1. Using the computer that you plan on doing most of your internet shopping from go to the Band of Parents web site and click on the iGive logo or type www.iGive.com into the address line of your browser.
2. Sign up for iGive.
3. Find the Band of Parents listed under charities and choose that as your charity.
4. Make sure your pop up blockers is turned off and your computer should be set to accept cookies.
5. Once you are signed up you can begin shopping.
6. To do this log in to iGive and then click on the "Shopping" tab at the top of the iGive page and then choose from over 700 stores listed there. You can do this from any computer.
7. The donation can be tracked on the top right hand side of the iGive page but may not appear there for a few days to a weeks.
ALSO, instead of Google, do your internet searches through www.goodsearch.com. Be sure to select "Band of Parents, Dewitville, NY" from the pull-down menu and GoodSearch will donate to BoP for every search you do. It costs you NOTHING. You can download a toolbar to make it easy to use every time you need to do a search. There's also a shopping option (GoodShop) just like iGive.
Okay, the NOT FREE stuff...... it's not too late to order your Christmas cookies from cookiesforkidscancer.org. There's still plenty of time to order and receive your cookies by Christmas. Again, PLEASE be sure to select Band of Parents from the pull-down menu on the billing/shipping page under "additional info". Otherwise, your donation will go to a general pediatric cancer fund, not BoP.
Thank-you as always for all your prayers for Ryan.
Love,
Norma and Paul
NOVEMBER 26, 2008
Hi everyone,
Haven't updated in a while because we've been too busy being HOME and SLEEPING IN OUR OWN BEDS, and EATING HOME COOKED FOOD and just BEING ALL TOGETHER!!! Ahhhhhh!
We got home last Friday night. Ryan was thrilled he was home in time to go to his best friend Duncan's birthday party on Saturday. Sunday at church, Fr. Conole who officiated at A Night For Ryan a couple of weeks ago, welcomed Ryan back by introducing him to the congregation (to much applause) and keeping him up on the alter with him throughout the Mass. Monday it was off the the Jimmy Fund Clinic for a blood transfusion. Tuesday was spent going thru a month's worth of mostly boring mail AND all the wonderful mementos from A Night For Ryan, including rosary beads which were made out of the individual beads everyone held that night and made a special prayer or wish on. I don't know who took the time to string them all together to make the rosaries, but they are beautiful and we will treasure them. There was also a framed copy of the program from that night and a binder of messages written to Ryan as well as many cards. We haven't had a chance to watch the DVD yet.....I want to watch it without the boys first and get my blubbering out of the way. :-) Once again, we wish to thank everyone who organized and participated in that special night. The kindness, caring and generosity shown to our family is overwhelming and deeply appreciated.
Other very special gifts we received include Miraculous Medals which were blessed by the Pope when he was in NY a few months ago. Thank-you Mal. And also some sacred items from Jerusalem which Paul's sister's boss Gil brought back from a recent trip to Israel. This endeavor was not without great risk, but he did it for Ryan and we are eternally grateful.
And today we are back at the clinic for platelets - hopefully a short visit. BTW, at holiday time, blood and platelet donations tend to drop off as everyone gets very busy. If you are able, please consider a trip into Children's Hospital in Boston to donate.
Visit their website for information.
So, tomorrow as you sit down to your Thanksgiving feast, PLEASE step back from the frenzy and take the time to reflect on all you truly have to be thankful for. We know many families who will have an empty chair at the table for the first time this year, and many, many more who have already endured several Thanksgivings without their precious child. Still others who are far from home and in the hospital. So if you are a parent and are blessed with all of your healthy children around the table tomorrow, say a prayer of thanks (even for the ornery, mouthy teens).
I admit we've had to look a little harder this year, but we have much to be thankful for too. We are most thankful that we are all together this Thanksgiving, that Ryan is feeling well, that we have so many wonderful friends and family supporting us, that Ryan has brilliant doctors working SO hard to give him the best care possible, and, last but not least, that the price of gas is under $2.00 a gallon!!! Not a small thing when you do as much driving as us!! LOL!!
On that note, a very Happy Thanksgiving to all.
Love,
Norma and Paul
P.S. We head back to NY next Tuesday for bone marrows and scans. PRAY PRAY PRAY for good news and plan moving forward.
Also, please keep our little friend Owen Leain your prayers as he is facing his 6th relapse
NOVEMBER 16, 2008
Hi everyone,
Quick(er) update (stop cheering). Several people have told me I haven't updated in SO LONG. 3 days is so long???
For the most part, no news has been good news.
It looks like we'll be (at long last) heading home on Friday. We were hoping for today (Wednesday) but in clinic yesterday they needed to start him on IV hydration. His kidney function numbers weren't good. Just not drinking enough. So we're back to lugging around a backpack of hydration. They'll recheck him again on Thursday and probably Friday as well to make sure he's good for the weekend. He got platelets yesterday and will probably need them again before the weekend. His other labs were pretty good, white cell count and hemoglobin were higher than I expected which was a nice surprise. Though he got sick several times on Monday morning, there has been no vomiting yesterday and today. YA-HOOO!! He's in good spirits, hanging out with a few of his buddies here - some are old friends he hasn't seen in ages, some are new friends. He also started doing some schoolwork and is on the third Lemony Snicket book now.
Well, the chemo seems to have obliterated his taste buds along with the bone marrow and hair follicles. Even though he feels hungry at times, nothing tastes good to him so he's still not eating that much. He's lost 3 or 4 pounds. Let's hope the chemo did as good a job obliterating the bleeping cancer cells as well! We're continuing the appetite stimulant.
Ryan's next set of scans is scheduled for December 4th and 5th so we're home until then. That means home for Thanksgiving, which is exactly what Ryan wanted. :-)
BTW, after all the worry about being home in time for Matthew black belt ceremony this weekend, THEY RESCHEDULED IT. G-r-r-r-r-r-r!! It's now December 13th and we of course have no idea where we'll be then. *sigh*
Thank-you for all your continued prayers for Ryan.
Love,
Norma and Paul
NOVEMBER 16, 2008
Hi all,
Things continue to move in the right direction. His white blood cell count yesterday was 0.4 with an ANC of 200 (ANC of 500 is our ticket out of here). Still waiting on today's labs. He has not had any fevers in a couple of days - a very good thing. The mucositis appears to have cleared up. Everyone told us as soon as those white cells started to kick in, it would clear up fast. SO, SO, SO glad to put that behind us. He's still getting platelets about every other day but hasn't need red blood in several days. The TPN (IV nutrition) is still running but as of yesterday (Saturday) they also started him on Megace which is an oral appetite stimulant. They'll do both while he's inpatient to help "build him up" (Dr. Kushner's words) and then just the Megace when we're discharged. This yesterday afternoon he actually ate something - 7 or 8 zitis - which is more than he's eaten cumulatively in the last 3 weeks. Baby steps, right? He's still on all the antibiotics and antifungal. I'm not sure how much longer for those or if we'll need to continue them after he's discharged.
Saturday afternoon he realized that he and Matthew should be in Connecticut right now for their Siblings Weekend together at Hole in the Wall Gang Camp. They were both SO looking forward to it. It upset him so much he cried. More tears last night when he asked if he would be able to be at Matthew's Black Belt Spectacular next Saturday and I had to say I didn't know. "I really, really, really want to see Matthew get his Black Belt" (face in pillow). I told him to let Dr. Kushner know that tomorrow. Of course he'd have to wear a mask, which he hates........but I'll be thrilled to have to have that argument with him.
UPDATE ON THE UPDATE: THIS JUST IN....... Ryan's ANC is 500 today. Weeeee're OUTA HERE!!!!!!!!!!!!!!!! IV antibiotics will be stopped as well as the TPN. We just need to continue on Megace and the GCSF shot (to boost white count). They want to see Ryan at the clinic on Tuesday, but we should be HOME in plenty of time for Matthew's Black Belt ceremony!!! The smile on Ryan's face right now is ENORMOUS!
Back to business....
Many of you have been incredibly generous to us since Ryan's relapse to help with his treatment expenses and we are both humbled and eternally grateful. Ultimately, what Ryan and so many other kids need is of course A CURE. Earlier in the week, our BoP president met with Dr. Cheung at Sloan and got an update on the status of HU3f8 among other things. Though nothing can happen fast enough for families in our situation, he was most enthusiastic about the pace of various projects FUNDED BY BAND OF PARENTS. BoP as given 2 $500,000 grants to Sloan for Dr. Cheung's work and has just authorized another such grant. I hope to share more details of the projects update with you soon. Soooooo,
As the holiday gift-giving season is upon us, we wanted to let everyone know that Cookies For Kids Cancer is BACK! This year with a couple of new twists. Instead of trying to get an army of volunteers to bake, package and ship cookies, now you can simply go to the site and click on the buy cookies tab and order away. The cookies are baked packed and shipped to your gift list without band of parents having to do the almost impossible task of baking and shipping themselves....The flavors are listed and the cookies are bigger and done by a bakery who adopted our cause with passion. Ordering starts November 15th, so make your list! Please visit the website and tell all your friends about ordering cookies for holiday gifts. Maybe your office, church, neighbors will want to host a cookie fundraiser for us. I have attached an order form. This form is to be used if you are going to "take orders" from people at work or neighbors etc. With this scenario you would do the "girl scout cookie " method. You would take the orders and have them make out their checks to YOU. Then you would take the form and make one order on the cookies website www.cookiesforkidscancer.org with your credit card and distribute them when they arrive. Or, individuals can just place their own individual orders. All orders placed now ship Dec. 1 - Dec. 22nd.
Also, Cookies for Kids Cancer is not just for Christmas anymore. You can go to the site and get great materials to hold a bake sale ANYTIME. All childhood cancers are an option and neuroblastoma/bandofparents is one of the dropdown menu items to check. You simply download the materials with sample fliers etc on how to run a bake sale for the cause. You mail in a check to Band of Parents afterwards. This is something that can be done anytime, year-round and is a great option for student/church/community youth groups/scout troops, etc. looking for a worthy community service project.
The second attached file is a flier to explain our cookie drive. Please consider posting fliers at work, church, or wherever you feel appropriate.
THANK-YOU for your continued prayers for Ryan and all our NB warriors.
Love,
Norma and Paul
NOVEMBER 12, 2008
Hi everyone,
Wow, three whole days without an update. Must be a good sign!
Overall, things are much improved. Ryan is feeling about a gazillion percent better (there really was no place to go but up). He's been making a couple of treks to the playroom every day. He's beat me at Sorry and Monopoly and won some Legos as prizes for Bingo. It's kinda cool the way they do Bingo. Kids who are mobile go to the playroom and kids who aren't get a walkie talkie and the numbers are announced over the walkie talkies so that way everyone can play. He's won 3 Lego prizes and tonight said he was keeping one and giving the other two to Matthew. All together now........"AAAWWWWWW".
Our friend Barbara from Candlelighters has introduced him to the Lemony Snicket books and he's almost done with the first one. She and I started out reading it to him and now he's feeling up to reading himself. And our friend Sue came down from Albany and has been trying to rouse Ryan's appetite with confections from a nearby French patisserie. He tried but couldn't quite do it. Of course, I just couldn't let them all go to waste.......or is that waist. :-) He's mostly just eating the occasional popsicle still. The TPN (IV nutrition) continues so we know he's getting some nutrition and calories. I'm sure that's part of what's helping him feel better and stronger. He does tire easily so naps a lot.
Ryan's white blood cell count "skyrocketed" to 0.1 yesterday.....hey, it's a start. He's getting platelets about every other day and red blood less often. He is still getting fevers - thankfully nothing has grown out of the cultures so far. The docs want to be careful and are keeping him on that truckload of antibiotics, even adding another one today. He's also on an antifungal that has a possible side effect of the shakes and a fever. They refer to it as "shake 'n bake". Of course Ryan gets this side effect. The mucositus is still there - he did vomit some blood the night before last. Puked a couple of times today but at least no blood so I'm hoping that means it's starting to resolve.
We still have no idea how long we'll be stuck inpatient. We're hoping those stem cells are going to kick in very soon and things will move along more quickly.
Thank-you to everyone who continues to pray for Ryan. Please don't let up. He still is at great risk of infection and is only just beginning to recover from this heavy hit. The trauma of the last 3 1/2 weeks - news of the relapse, grueling treatment, more grueling side effects will all be replaced by the unbearable anxiety of the next set of scans which should be in 2 or 3 weeks.
Please keep all our NB warriors in your prayers as well.
Love,
Norma and Paul
NOVEMBER 09, 2008
Hi everyone,
Ryan seems to be perking up a bit. Yesterday (Sunday) he said those magic words "I'm hungry" after 11 days of not eating a morsel. Music to my ears! He only drank a little bit of a milk shake, but it's a start. Today he was hungry again and tried some chicken soup, but he didn't like it. The other issue with eating is that, due to the mucositis, he's having trouble swallowing. Some of it is pain and some of it is the feeling that something is in his throat that makes it difficult to swallow. This could be the sores healing and causing sort of like a scab (gross, I know). So, we tried popsicles tonight thinking cold stuff might go down easier and ease any swelling. He ate almost a whole one, so that was good.
As you might have guessed by the above, the nausea and vomiting have stopped FINALLY!!!!! He threw up once on Friday and that was it. Though I'm pretty sure he set a new world's record for chemo-induced nausea and vomiting. Today they decided to back off on some of the anti-nausea meds only leaving one given every 8 hours. The diarrhea still persists, but may be helped by eliminating some of these meds.
He continues to get fevers (as high as 102.2) so is still on a truckload of antibiotics and an antifungal to cover the possibility of infection. So far nothing has grown out of any cultures, which is a HUGE relief.
This coming week Dr. Kushner (Ryan's doc) will be the attending doing rounds on the floor so it'll be good to have someone who knows Ryan and his history so well. He's the one that ran the marathon. Did I mention he was in work the next day after running 26 miles!?!?!?!
Paul and Matthew came down again, arriving on Thursday evening. They just left this morning. You'd think by now we'd be used to these separations, but I think it's actually getting harder and harder on us all. I was talking with another mom here who got stuck here in NY an extra day due to her son getting a fever. That meant the she would miss her daughter's big gymnastics meet at home. Which reminded me there's a possibility we might not be home for Matthew's Black Belt Spectacular on the 22nd when he'll receive his Jr. Black Belt. I spent a lot of time this weekend helping Matthew with his karate form that he has to make up himself from scratch and set to music to be performed at the BB Spectacular. We didn't have time to finish and now I'm feeling guilty that I'm not home to help with it. Matthew seems to really be feeling the strain of this long separation this time more than ever (as we all are). He hugged me more this weekend than he has in the last 2 months! (sh-sh-sh. Don't tell him I told you.)
Paul really savors these brief few days with Ryan. Even in spite of the back-breaking chair/bed he has to sleep on (giving me a break to get some sleep) plus getting up multiple times a night with Ryan, it's better than being 5 hours away, wondering and worrying about what's happening to Ryan, especially when SO MUCH had been happening to Ryan. So, when the time comes for them to go home, it's just really hard for all of us.
Even the Amazing Super Ryan has been down in recent days. He's always been known for his incredible ability to roll with the punches and though he's not as down as he has every right to be, this is the saddest I've ever seen him in treatment. Over the last couple of days, his hair has started to fall out again and today he started crying about it. "It just finished growing back IN". Again, something you'd think he (and we) would be used to, but I was biting back tears too looking at his pillow covered with hair. And of course he misses Dad and Matthew, his own bed, home cooked meals, etc. Tonight he had a visit from our friend Barbara from Candlelighters (she brought the popsicles) and that seemed to cheer him up a lot. He was smiling and more animated than he's been in a while.
This has certainly been the roughest stretch he's ever had in treatment. It's been horrible to watch - I can't imagine what it's been like for him to experience it. There's really nothing like watching your child vomit for nearly 2 weeks straight; vomit blood repeatedly; have more lines hooked up to him than your home entertainment system; not eat for a week and a half; look as listless as a wet rag - and know you signed the papers that did it to him. Well actually Paul signed them. My hand was shaking too much. But I'm still an accomplice. I'm really not quite sure why this doesn't qualify as child abuse.
Not to whine, but the stress and strain on each of us, in different ways, is taking it's toll. We're all getting a little frayed around the edges I guess. Battle weary. Just plain sick and tired of it all. Whatever you want to call it. Everyone always tells us how strong we are. It doesn't always feel that way. If you visit the BopShop you can buy t-shirts/mugs, etc. with a saying on it by Winston Churchill: "If you're going through hell, keep going." That's what we're doing.
Okay, don't want to end on a blah note. From everything we've heard, the Night For Ryan on Friday was beautiful. The church was FULL and our Pastor, Fr. Canole as well as many others put together a wonderful service. I understand it was video taped so we're looking forward to seeing it sometime soon. Once again, our heartfelt thanks to all who organized and participated in this event for Ryan. Let's see, it was Saturday that we started seeing more improvement...........hmmmm.
KEEP PRAYING! Ryan has a loooong way to go and a very big mountain to climb. But he WILL get there!
Love,
Norma and Paul
NOVEMBER 06, 2008
Hi everyone,
So yesterday's good news about the MRI was quickly tempered today by two new developments. One is that he got another fever while still on the 2 IV antibiotics he was getting for the first fever a few days ago. The possibility of infection is always scary when your white blood cell count is 0.0!! He's had neutropenic fevers in the past with no infection found. Let's hope that's the case here. As a precaution they've added a third (big gun) antibiotic and are doing more blood cultures. PRAY THAT NOTHING GROWS OUT OF THEM!!!
The other thing is that he's developed mucositis. For the high dose chemo unitiated, mucositis, a common side effect of HD chemo, affects the mucosal cells lining the mouth, throat, stomach and intestines causing raw sores/ulcers. As you might expect from that description, it is painful. They held off on the PCA pump yesterday because he didn't seem to need it, but will start it now to control the pain associated with the mucositis. He does not appear to have any sores in his mouth but we know they're there somewhere in his digestive tract - don't ask how we know - it ain't pleasant. We can't expect it to resolve until his counts come back up, which could be a while. Sores can obviously be an avenue for infection. PLEASE PRAY THAT DOESN'T HAPPEN!!
Vomiting continues, though not as much. Diarrhea continues too. He'll get more platelets tonight.
Paul and Matthew are on their way as I type and will stay thru the weekend.
Last but not least, I wanted to acknowledge the wonderful people from the boys' school, our church and the community who are coming together Friday night for A Night For Ryan at St. Patrick's Church in Groveland. It will be an evening of music, prayer and support for The Amazing Super Ryan. We deeply, deeply, deeply appreciate the efforts of everyone involved in planning this evening for Ryan. And of course, our heartfelt thanks to everyone planning on attending.
We also want to express our gratitude to a good friend for hosting a prayer service in her home last night. Thank-you Elaine, Mal and all who came together to lift Ryan up in prayer.
Thank-you EVERYONE for all the love, support and prayers for Ryan and our family.
Love,
Norma and Paul
NOVEMBER 05, 2008
THIS JUST IN: 5:36 PM, 11-5
MRI IS NEGATIVE!!!!!!!!!!! HALLELUJAH!!!!!!!!!!!!!!
Thank-you for all the prayers!!
Love,
Norma and Paul
Hi everyone,
We need to ratchet up the prayers A LOT. Things are not going well at all. Remember the nagging low sodium thing? Well late yesterday they said they thought it was this syndrome called SIADH - Syndrome of Inappropriate Antidiuretic Hormone (which they confirmed today). It occurs when excessive levels of antidiuretic hormones (hormones that help the kidneys, and body, conserve the correct amount of water) are produced. The syndrome causes the body to retain water and certain levels of electrolytes in the blood to fall (such as sodium). It can be caused by one of the chemo agents Ryan received last week although doesn't usually occur this far out from the chemo. Another cause can be CNS disease (brain tumor). It's treated by restricting fluids - which they've done since last night - and so far today his sodium level has risen to almost the normal range.
Ryan's system being super sensitive to all this chemo can mean that it is indeed caused by the chemo. However, it's worrisome enough that they want to do a brain MRI today. Since he's a late add-on to the schedule, it probably won't happen until tonight unless there's a cancellation, which means no results until tomorrow sometime.
His nausea and vomiting continue, although he's been good for about 2 or 3 hours now. Early this morning he vomited blood which freaked me out big time. With all the vomiting his esophagus is raw. That, plus the low platelets caused the blood. So they gave him a platelet transfusion and will raise the level at which they usually transfuse. They want to keep his platelet count above 50 - usually they don't transfuse until it hits the teens.
He's also been having some pain in his rib area, likely due to the retching and sometimes some pain in his throat as well so they're going to put him on a PCA pump for continuous pain meds. With so many things needing to be infused, they are also going to have to put in a peripheral IV line because they can't run everything simultaneously thru his single line port.
So, first and foremost PLEASE pray that his MRI is NEGATIVE. And then all the other stuff.
Love,
Norma and Paul
P.S. Just heard from his nurse that they got him in for an MRI at 12:30.
NOVEMBER 04, 2008
Update 11-03-08 Part I
Hi everyone,
Ryan is still inpatient. He's had a so-so weekend. There were lots of Halloween activities at the hospital on Friday but he felt too yucky to care. The electrolyte imbalance has been corrected. He's had a couple other issues pop up. One is that his blood pressure was quite high for awhile. That can be caused by him retaining too much fluid. Of course they have him on IV hydration because of all the vomiting and diarrhea. It's a delicate balance, so they reduced the hydration somewhat and the BP came down. The other issue was a slight irregularity in his EKG. That can be a result of all the anti-nausea meds he's been on. Again, delicate balance. Can't stop the anti-nausea meds because he's still feeling the side effects of the chemo. I'm told it's reversible once those meds are stopped, which hopefully will be soon.
Yesterday was the NYC Marathon. It's a big deal around here because of Fred's Team which raises $$ for Sloan. With permission from the docs, Ryan (and many others) were allowed to go outside to watch for a bit and cheer on Fred's Team. I admit I had to push Ryan a little to go but I thought the fresh air would do him good so we wheeled him down, IV pole and all. He only lasted about 15 minutes but we did get to see Dr. Kushner go by. A short time after we got back to the room, Ryan was feeling much better - so maybe the fresh air WAS a good idea. He felt pretty good the rest of the day/night with no nausea.
Today is the Big Day when he gets his stem cells, sometime this afternoon I'm told. He's been feeling a little pukey again this morning so the anti-nausea meds continue. His blood counts have started their precipitous drop. He received his first red blood transfusion this morning, with many more to follow I'm sure.
Sadly, Paul and Matthew had to head home yesterday. It was nice all being together and it was great for me to be able to get some sleep as Paul stayed with Ryan Thurs., Fri., and Sat. nights. It was soooo hard for him to leave. It was good for both of them to have some "guy time" together. Unfortunately, most of the time Matthew was at the hospital, Ryan wasn't really feeling up to doing much with him. But still, it was a boost for each of them just to be together.
So, overall I'd say he's feeling better. Not good, just better. He's had stretches where's he's been feeling well enough to watch TV and even made a trek to the playroom to find a movie to watch last night. He also came over and sat down at the computer to read the guestbook, which he really enjoyed. He does get dizzy though. I appear to be the only one concerned about the fact that he hasn't eaten anything since last Tuesday evening (remember the nachos?). I'd be dizzy too! The docs say to give it a bit more time to see if he can eat on his own, but he may need IV nutrition (TPN) if that doesn't happen. The thought is that the nausea SHOULD be winding down enough that he might want to start eating in the next day or so.
Please keep the prayers going strong and don't let up! We need to get him feeling better and we need him to stay fever-free. A fever would mean a LONG hospital stay till his counts recover. Avoiding that would be a small miracle. But, since we're asking for a BIG miracle, why not throw in a small one too as a warm-up??
Please keep the family of Brody Hurt in your prayers. Brody passed away early this morning after battling NB since last September. He just turned 8.
Also, the family of Faith Griffin who passed away yesterday. She was diagnosed with a brain tumor last October. She would have turned 6 later this month.
We are once again reminded that as difficult as the last nearly 5 years has been, at least we're still in the fight.
Love,
Norma and Paul
Update 11-03-08 Part II
NOVEMBER 04, 2008
Hi all,
OY, what a day!!! Ryan was pretty miserable the whole day with more nausea and vomiting than he's had in a couple days. Just when you thought it should be getting better......
I realized early that his continuous zofran drip was gone. It was noon before I could get someone to fix that. Ryan had to have his port needle changed today since it had been in a week. When his nurse went to re-access him it was a disaster. She couldn't get the right spot and stabbed him in the wrong spot. She had to get another nurse to come in and do it. *sigh*
Then, his blood pressure went up again. Waaay up (160's over 120's at one point). They don't know why exactly. It's not the fluid retention thing again - his input and output are normal. By this time (1 p.m.) his stem cells are literally sitting by the door waiting to be infused BUT, the BP thing is in the way since the infusion itself can raise the BP a bit too. Oh, and now he needs platelets too. They give him a diuretic hoping maybe a little "off-loading" will in fact help the BP, then he gets some platelets, then the stem cells, then more diuretic. BP is still high. They finally had to give him BP med to bring it down. And all the while he's vomiting every so often. *sigh*
Then, the cherry on top. Late this afternoon he got the dreaded fever. Okay, little miracle DENIED. So we're stuck inpatient until his counts come up. If history is any indication, that could be as much as a couple weeks. G-r-r-r-r-r-r-r!! Now we add 2 IV antibiotics to the mix. His nurse finally came in with this MEGA pump to handle all the various meds - the one I'd seen other kids with and thought to myself "Gee, they must be in deep sh_t to need that thing. Glad that's not Ryan." *sigh*
Tomorrow they start TPN (IV nutrition). Don't ask me how they'll manage that!
Okay, now that you're all bummed out, I'll give the late breaking good news. Tonight he fell asleep for about an hour and woke up a new man. I mean a complete 180. He asked to play with his DS. I offered him some Jello and he said YES and proceeded to eat 3/4 of it, plus a couple of potato chips. At one point he said "This is weird. I feel great." I won't jinx ourselves by making any prediction on what this means for tomorrow, etc.
Well, apparently merely typing it was enough of a jinx. I no sooner typed the above and tossed his cookies again. AAARRRRGGHH!!!!!!!
You know you've been a cancer parent too long when you can hold a puke bucket in one hand for your kid and eat a sandwich with the other.
Keep praying.
Love,
Norma and Paul
OCTOBER 31, 2008
Hi all,
Happy Halloween!
So, once we got to the clinic yesterday, they made more adjustments to his meds and got the nausea and vomiting under control again thankfully. He felt much better from late morning on. However, Ryan was admitted yesterday, late afternoon. The primary reason was that his electrolytes were out of whack with his sodium being of particular concern. They held off on one of the chemos he was to get yesterday because it alone can cause the sodium to drop. He'll get it today since they have the electrolytes back where they need to be. The other reason for admission was so that they could keep on top of the nausea with IV meds that I can't give at the Ronald. BUT, something got lost in the transition and he didn't get the proper regimen over night so he again had a miserable night of vomiting, though not AS miserable as the previous night.
After hearing how bad Ryan was doing yesterday, Paul took Matthew out of school and they drove down to NY. He stayed with Ryan at the hospital last night so I could get some much-needed sleep. Ryan was happy to see them both of course and vice versa. There's lots of Halloween activities at the hospital today but Ryan doesn't feel up to any of it.
We're hoping this is just a short stay and that he will be discharged over the weekend. Monday he's scheduled to receive his stem cells, which arrived Wednesday from Boston. Whew! Can't tell you how nervous shipping these precious stem cells made me. I wanted an armored car with a Secret Service detail but that probably didn't happen. I didn't actually ask how they were being shipped for fear I'd hear "DHL" or something and have a stroke. DHL were the ones who were shipping his radioactive isotope from Canada to Sloan last year. Ryan's treatment was delayed a day because it went "someplace else".
So this is his last day of chemo. HOOOOORAY!!! We hope and pray that it does the trick and all this misery wasn't for nothing. We've been told many times by different people that they've had a very good response with this cocktail. Scans will be done in a couple of weeks and will surely be the most anxiety-riddled few days ever.
Please continue to pray that Ryan feels better soon, avoids a fever and of course that he will be NED forever!!!!!! The Amazing Super Ryan has wrestled the beast to the ground before, and he will do it again!
Love,
Norma and Paul
OCTOBER 29, 2008
Hi everyone,
I thought that the good day he had on Tuesday meant we had things under control. WRONG! Wednesday was AWFUL. The nausea and vomiting came back with a vengeance. By the time we left the clinic at 6:30, he was vomiting every 10-20 minutes, just like on Monday except it lasted all night long. This morning he's a rag doll. We're leaving shortly for the clinic and I wouldn't be surprised if they admitted him. Please, please pray that this nausea and vomiting stop. He's so miserable and it's killing me to watch him suffer. Though I would point out that Ryan has not complained or whined or anything. He just throws up, says he's fine now, goes back to sleep and does it again in 20 minutes.
Gotta go catch the shuttle van to the hospital now.
PRAY, PRAY, PRAY!
Norma
OCTOBER 28, 2008
Hi everyone,
Well Day 2 went MUCH better than yesterday. He did vomit 3 times early this morning but once we got to the clinic, they adjusted his anti-nausea meds, adding a couple and changing one to a 24-hour continuous drip - which means another backpack to drag along in addition to the hydration one, but it's smaller and who cares as long as it works. He hasn't vomited once since then and the diarrhea held off until tonight.
All these meds make him very sleepy though so he pretty much slept from late morning till we left at about 5:30. He slept another hour or so at the Ronald. He then woke up, announced he was hungry and ordered nachos for dinner. He ate almost all of it along with a glass of milk while we watched a movie together and now he's back to sleep. He was in much better spirits tonight too (as am I).
So tomorrow will be a loooooong day. He gets 4 chemos - one of which alone is a 6-hour infusion. Ugh.
Thanks again to everyone who has signed Ryan's guestbook. He loves reading the messages. And thank-you for the e-mails and snail mails too.
Sunday is the NYC Marathon. A few people we know will be running on Fred's Team which allows friends and family of runners to sponsor their run and raise $$ for Slaon Kettering. While runners can designate their funds to be allocated toward any area of cancer research, money raised by Fred's Team runners primarily benefit the Aubrey Fund for Pediatric Cancer Research at Memorial Sloan-Kettering Cancer Center. A good chunk goes to neuroblastoma. Ryan's doctor, Dr. Kushner is running again along with some nurses and NB parents we know. Check it out at http://www.mskcc.org/mskcc/html/14334.cfm There will be a big cheering section in front of Sloan and, if Ryan feels up to it, we hope to go.
Thank-you to everyone who is praying for Ryan.
Love,
Norma and Paul
OCTOBER 27, 2008
Hi,
We had a great, fun-filled few days at home. Ryan went to school for a couple of days, got to attend the school's Halloween party, saw the new High School Musial movie AND even got to go trick-or-treating. A neighboring city does trick-or-treat the Saturday before Halloween. Ryan's 1st grade teacher and 3rd grade teacher both live there and invited our family to join theirs for trick-or-treat. We all had a blast. Thank-you so much Mrs. Zanardi and Mrs. Lopata for saving Halloween for Ryan!
Now back to NY and back to reality.
Day 1 is done. It started out okay but deteriorated fast as the afternoon and evening wore on. He got 3 chemo drugs today: temedar, carboplatin and irinotecan. Even with anti-nausea meds, he began vomiting mid-late afternoon. He also has really bad diarrhea caused by the irinotecan. I'll preserve his dignity by not going into detail, but it wasn't pretty.
We got to the clinic at 8 a.m. and left about 6:30. Since we've been back at the Ronald he's been vomiting about every 20 minutes, though the diarrhea seems to have abated. They sent us back with IV hydration so we'll be up several times during the night I'm sure for that side effect. He's wiped and he's sad......and it's just Day 1. Please pray that they get a better leg up on the side effects the rest of the week.
BTW, I made a mistake the other day on the list of drugs he's getting. No vincristine, but they did add the irinotecan.
Tomorrow he'll get the same 3 chemo drugs as today again.
He wore his super hero cape that my friend Sue made for him last year to the clinic today. He took it off before the chemo was done. Maybe that was his mistake.......cape stays on tomorrow.
Please remember all our NB warriors in your prayers, especially Brody Hurt and Kody Edwards who are on hospice care.
As always, thank-you for your prayers for Ryan.
Love,
Norma and Paul
OCTOBER 23, 2008
Hi everyone,
We are home. For now. We met with Dr. Kramer this morning and have decided to go ahead with their treatment recommendation at Sloan which will begin on Monday the 27th. The positive bone marrows made that a somewhat easier decision. We consulted with Dr. Sholler in VT regarding their Nifurtimox study. Ryan would qualify but with the positive bone marrows, the fact that they do no chemo the first 2 rounds (only the Nifurtimox) made us too nervous that it left too much room for disease progression. We will keep that one in our back pocket for now and may go with it later.
So, as we said last night, they're recommending high dose chemo. Lot's of 'em. For those of you unfortunate enough to have more than a passing familiarity, Ryan will be receiving Temedar, Carboplatin, Etoposide, Vincristine and Cyclophosmamide. I glanced down at the paper as Dr. Kramer was writing them down and I said "the kitchen sink, eh." She said no, not quite. Hard to believe there's a meaner cocktail out there. So these will be given over 5 days. He will not get each of them all 5 days. Some are just 2 days. He has had all of these in the past although 3 of them not since the first two or three rounds of chemo he did back in early 2004. Sometimes if you haven't had an agent for a long time, you can expect a bigger bang for your buck. Ryan will receive an infusion of his stem cells the following Monday - they don't wait to see what his counts will do. It's a foregone conclusion that this will obliterate them. The stem cells are being shipped from Boston. Dr. Kramer reiterated what Dr. Kushner had said - that there is still every reason to be hopeful. She felt this one cycle might just knock it out completely. Or, if it cleared the marrow and some of he spots, we could then radiate the other spots. We could also maybe go to VT for the Nifurtimox (not her suggestion, just our own thinking).
In addition to the plummeting blood counts with many transfusions, we can expect Ryan to get very sick with nausea and vomiting. We're all but guaranteed a hospital admission for fever/neutropenia at some point. It could be lengthy (2-3 weeks). He may need nutrition support too. This was not a decision we entered into lightly but feel strongly that given the extent of this relapse in just 3 months time, we have to hit it really really hard. Of course his hair will fall out again. We asked him if he wanted a buzz cut now to lessen the effect. He asked "do I have to?" and I said of course not. I told him he can do whatever he wants with his hair. He can dye purple if he wants. Tonight he asked if he can spike it for school tomorrow. Sure!
Backing up a bit, when Dr. Kramer first came in, she made it point to tell us how "crushed" they all were at the news. As I've said before, I know in my heart that Ryan is extra special to them. They've treated him for so long and let's face it. How can anyone NOT fall in love with Ryan????? We talked a bit about what he does and doesn't know; needs and doesn't need to know. She kind of gave us a little compliment saying that whatever we've been doing for the last 4 1/2 years in that department is working. Ryan is always so happy go lucky and never seems depressed or angry. At least not for very long. We had to tell him that he'd miss Halloween at home AGAIN and he cried more about that than when we told him about the relapse! But, again he has gotten past it and is in good spirits. The Amazing Super Ryan!
By the way, this would be a good time to let everyone know that Ryan was only told that he has "a couple" of spots. He knows nothing about the bone marrow. We want to keep it that way so as not to scare him. His positive attitude is very critical at this point. So anyone who is around Ryan, please avoid discussion of his disease or at least keep it to a bare minimum, maybe letting him take the lead if he wants to talk about it. Just don't go into detail and keep everything POSITIVE.
We did manage to squeeze in some fun in NY. We took a short vacation from "IT" on Tuesday, starting off with another trip to the Early Show (remember David Cook a few months ago). This time it was to see the cast of High School Musical, one of Ryan's favorite movies. All this thanks to CBS and Barbara Zobian of Candlelighters NY. We were seated behind the stars during the taping and got to see more of their butts than anything else, but it was still very exciting for Ryan and we got a few good pictures. It will air on Friday morning for anyone who wants to see it. Barbara wasn't done with us after that though. She was on a mission to give Ryan a fabulous day. She whisked us over to the Build a Bear shop where Ryan was treated to a tour of the whole HUGE store, picked out his complimentary bear, stuffed it, picked out clothes, shoes, accessories, etc. Truly the royal treatment from the great staff there. From there, a bite of lunch and then Ryan went back to Barbara's to watch movies and hang out with her and Uno (Barbara's Yorkie) giving Paul and I a chance to go back to the Ronald to decompress and discuss what we needed to discuss. It was a long day but a memorable one! Thank-you Barbara!
So now the decision has been made. We'll take these few days at home for some normalcy before hell week(s). Ryan will go to school Thursday and Friday, attend the school's Halloween Party on Friday evening, hang out with his brother and friend Duncan........and whatever other fun stuff we can think of. Ryan and I will head back to NY on Sunday (thanks for the ride Uncle Bob). Unfortunately, Paul has to work though he'd much rather be with Ryan.
I think we're both dreading this sooooo much and and yet want to just get it done and get him back to NED. We hate to put him through this and hope and pray we've made the right decision. In Sue's dream of him (last year ) at his high school graduation, he says to her "See, it was all worth it."
Once again, thank-you to everyone who is praying for Ryan, especially the Rosary Novena. Thank-you for all the e-mails and guestbook signings. We so appreciate all the love and support.
We will update next week.
Love,
Norma and Paul
OCTOBER 21, 2008
Just got an e-mail from Dr. Kushner. "Bone marrow shows neuroblastoma". Just when you thought it couldn't get any worse.........
He didn't say which cocktail, only that they're recommending a cycle of strong chemo starting next Monday. We'll go into the clinic tomorrow to discuss the details.
PRAY, PRAY, PRAY!
Norma and Paul
OCTOBER 20, 2008
Hi all,
Well, we're back in NY after sneaking home for the weekend. Ryan had a blast at the Halloween party! Well worth coming home just to see him have so much fun!
Without going into detail, we told Ryan about the relapse yesterday, only mentioning "a couple" of spots. He cried but took it much better than I thought he would. He's mad his hair will fall out again, just when he was probably a week or two away from needing his first haircut in a year. Matthew said "dammit" and was angry. They both rebounded pretty quickly though, moving on to playing Wii and other things (thank-you Uncle Michael for the new Wii games - very clutch). We've all been here before but they're much more resilient than us grown-ups.
We drove back to NY today and met with Dr. Kushner. He was very patient with our questions and concerns. He also understood and shared our concern about the toxicity of high dose chemo and needing to use up those precious stem cells. Ryan has 2 rescues left - assuming the quantity of each is still adequate for his current weight, which is being checked on. We all know Ryan's bone marrow is pretty beat up. His platelets are currently about 125,000 which is good for him but waaaaay below normal for you and me. Oh, and he also pointed out another spot on the scan a little lower than his rib tumor of last year which is likely also disease. We talked about standard dose and intermediate dose which may spare the stem cells BUT we cannot expect to reduce disease with those doses. Just keep things stable, hopefully. There's also the risk that those doses will allow disease progression. While we don't want to waste stem cells unnecessarily, we also don't want to leave them on the shelf and find ourselves with so much progression that nothing will help and they're no longer of any use. Sloan has a new trial coming out in a few months using NK (natural killer cells) which looks very promising. We MAY want to go with a lower dose now just to hang on until that trial starts. Of course you never know if the FDA will hold things up indefinitely which would screw everything up.
And then there's the bone marrows which are still pending but he put a rush on them and says we should have them tomorrow. He indicated that he thought they would likely be positive for disease. NOT what we wanted to hear. Paul and I both feel that if that is the case, the more aggressive high dose is definitely the way to go.
Upon our request, he's going to confer with Children's Hospital of Philadelphia regarding a fairly new MIBG therapy they're doing. Ryan had MIBG therapy there back in 2004 - with little or no response. There's no way to know if this newer version would be more effective or not. It would require a stem cell rescue. We also discussed ABT751 which is another agent used for NB. But from what we gathered, it not generally used as a curative thing, more for keeping low-level chronic disease stable or for NED kids to keep them NED. Not a big enough bang for our needs.
In the end, Dr. Kushner said the team would confer and brainstorm more tonight and tomorrow and get back to us with their specific recommendation. I think they really, really, really want to do the best for Ryan. Dr. Kushner said all the kids are special, but I truly believe Ryan has a special place in his heart. He said he watched the Red Sox game and was thinking of Ryan and how he'd react to the outcome. He and Ryan often talk baseball - Dr. Kushner the avid Yankees fan of course.
So is your head spinning yet?? Weighing the risk/benefit factor is just so difficult. There are sooooo many unpredictables and variables.
Please pray for guidance, for some clear sign of what is the right thing to do.
Thank-you to everyone who has sent messages of support. And a special thank-you to everyone who has taken on the Rosary Novena.
It was a year ago yesterday that we learned of Ryan's rib tumor. I also remember my friend Sue's dream/vision back then of Ryan at his high school graduation and Ryan's teacher here at Sloan who had a vision of Ryan's face as the man he would become. We still believe in miracles.
Love,
Norma and Paul
OCTOBER 17, 2008
Hello all,
I've been sitting here with my fingers on the keyboard for about 15 minutes. Words are not coming easily.
Ryan is sitting watching High School Musical 2 and dancing around. He loves this stuff. He is blissfully unaware that our recurring nightmare has, well, recurred. Ryan's MIBG scan this morning revealed several new spots of disease. We are beyond devastated. This is not just a "focal" relapse that is easily treatable. There are at least 4 spots on his legs, another on his hip, another on his shoulder and likely another on his skull. Dr. Modak was the only one of the team in clinic today and he'll confer with the others as to what to do next. He said that if we wanted to try to get rid of these spots, high dose chemo was the most likely path. Ryan would probably need stem cells to recover and it would be very hard on him. "If" we wanted to get rid of the spots. It seemed that in not so many words he was asking us if we wanted to still be aggressive or just go with palliative treatment. I asked about radiation and he said there are too many spots to radiate.
We are petrified to the zillionth power. I asked Dr. Modak point blank if this was the beginning of the end. He said "not necessarily". The one crumb of good news is that there is no organ involvement.
We are coming home this weekend. Ryan has a Halloween party at a friend's house that he's been looking forward to and we don't want him to miss it. Dr. Modak said that was fine. Whatever the treatment plan, it would probably start Tuesday, so we'll return on Monday.
IMPORTANT: We have not told Ryan yet. We want him to enjoy the weekend. So please do not say anything to him or talk to us about it if he's around until we've had a chance to talk to him - probably late on Sunday. A talk we are dreading more than I can say.
We expect a call from someone on the team over the weekend and will update again when we know what's coming next.
Please please pray for guidance for the doctors and for us. And strength for all of us.
Love,
Norma and Paul
SEPTEMBER 29, 2008
Hi Everyone,
We are back home after completing Ryan's 5th round of 3f8 (19th overall). It went reasonably well. Plenty of pain and hives. The usual. He had a MRI of his liver on Wednesday (remember the funny shaped liver thing). I got a message that it came back "fine". No other details. The scan itself was a 3 hour ordeal. 1 hour waiting, then having to stop a couple of times because of Ryan's cough and because he wasn't getting the "hold your breath and don't move" thing right. He thought he could just fill his mouth with air, hold that but still breath thru his nose. NOT! He had to do it several times for 17 seconds each time. And of course the actual scan time itself is about an hour at least. It was an otherwise uneventful week spent mostly in our room at RMH since he sleeps most of the rest of the evening after we return from the hospital. He did get to spend a little bit of time with his old buddy Jack Brown who was back in town. Jack is from England, was treated at Sloan for a long time and has been in VT for treatment for the past several months. It was good to see him and his mom.
We almost went down to the Early Show again. Candlelighters once again e-mailed us an invitation from CBS to come down to the Early Show to see Lance Armstrong. I asked Ryan if he knew who Lance Armstrong was and he said "I know who Neil Armstrong is". We didn't go but at least I know he's learned some history! We just need to work on current events.
So just when you think you know what's coming next treatmentwise, they throw you a curve. As I mentioned a few weeks ago I had a conversation with Dr. Kramer where she said she would like to start him on Temedar soon to address/prevent the possibility of another brain relapse. Monday of last week I had a very quick chat with Dr. Kushner who basically said the same thing. - "probably" Temedar next. Tuesday afternoons the whole team has their big weekly pow-wow to discuss patients. Wednesday morning Dr. Kramer tells me no Temedar, just stay with the 3f8 until he HAMA's. Hmm. So we're not worried about a brain relapse anymore???? She said that though there have been kids who have relapsed again in the brain, none of them were as far out as Ryan, so they think he's okay in that department. They're much more concerned about a systemic relapse and therefore, want to stick to the 3f8. Ryan was sitting right there so I didn't want to ask a lot of questions and I never did get a chance to talk to any of the docs again to get more details on the thought process. On the upside, no chemo means no toxic crap in his body, his bone marrow can continue to recover and possibly give us a shot at getting more stem cells, and we get to continue our nice 8-week breaks. On the downside, he did relapse while on 3f8. They keep saying Ryan's case is "unique" and I think this was just the best option at this time. I'm thinking they maybe want to save chemo for if/when he really needs it rather than simply as a preventive measure, and as I said, give his marrow a break.
On the home front, we made it back in time to go to Ryan's karate belt promotion on Saturday. He is now the proud recipient of a purple belt AND 2 medals for competing in the tournaments after the ceremony. He placed 8th out of 10 for Forms - but he really hadn't planned on competing in that one and wasn't prepared. He placed 3rd for nunchaks which he had been practicing for. Very nice! :-) To top it off, he was actually competing against the next higher belt level group since I screwed up and had the wrong time for his group's ceremony. Makes his accomplishment even more impressive dontcha think! And not to leave Matthew out, while we were away this past week he successfully passed the last of 3 pre-tests toward his Jr. Black Belt. Now it's on to Power Weekend in October and he should have his Jr. Black in November!!
Other Stuff:
Though the bulk of our fundraising efforts have been for Band of Parents whose mission we still strongly support, there are other NB organizations out there - started by parents of course - that are taking a somewhat different route in trying to facilitate better treatments for our kids. This is a war that needs to be fought on many different fronts and these groups have some very interesting and worthy projects they are funding. One group is Magic Water Project (www.magicwater.org) (see below) and another is Solving Kids Cancer (www.kidcancer.org). Both of these groups focus on getting new treatments to our kids soon. The research that yields a new breakthrough/treatment 5-10 years from now is important but obviously too late for many currently in the fight.
There is a unique fundraising event taking place to benefit Magic Water Project and to honor our sweet little friend Eden Brunskow who passed away last February. It's called HallowEden. Halloween was Eden's favorite time of year. Here's an excerpt from Eden's Caringbridge explaining the event: What is HallowEden all about? We’ll, there are a few of us that really want to get into the spirit of Halloween while honoring Eden, and trying to help children with neuroblastoma. Halloween was Eden’s favorite day of the year, as well as orange being Eden’s favorite color. So, a few of us (as many as we can recruit) are going to dye our hair orange at Studio 17 in Tustin on Sunday, October 26th. We’re getting people to sponsor us to raise money for MagicWater. Additionally, for those of you that want to be entertained by us “going orange”, the studio will be open for haircuts and all proceeds will go to MagicWater. So kids, parents, etc are all welcomed to come down and get their haircut between the hours of 11 to 4 - you will be supporting a great cause.
If you would like to sponsor any of the people currently going orange (which we would all love), here are our individual fundraising websites, along with a little info about what we are attempting to fund: Paul is Eden's Dad. You can sponsor him from afar thru the site. When I last checked, he was about 1/3 of the way to his $10,000 goal.
Eden was very much on my mind this past week. Ryan and I arrived in NY 3 days too late to participate in the annual butterfly tagging event held at the RMH every September. The display was still in the lobby though. The last 2 years, both Ryan and Eden did butterfly tagging together. It wouldn't have been the same without her, so in a way, I'm kind of glad we missed it. Ryan would have been wondering why I was getting teary-eyed over butterflies.
Ryan's next work-up is scheduled for October 16-17. This is almost one year to the day that his rib relapse was discovered last October. We're not superstitious or anything, but if these scans are still clear, that would be a whole year without another relapse. A pretty impressive feat. I have no real data, just personal observation that that would indeed be "unique". We feel sometimes like we have a stalker. The longer we go without any incidents, the more edgy we get thinking our luck can't hold out that much longer and the stalker will strike. PRAY, PRAY, PRAY!!!!
Please also keep Brody Hurtin your prayers He and his family were in Ny this past week thinking he would start MIBG therapy but scans revealed his disease had spread in just 3 weeks and his parents made the agonizing decision to stop aggressive treatment. They are now home in Kansas.
As always, thank-you for your prayers for Ryan and all our NB warriors.
Love,
Norma and Paul
SEPTEMBER 9, 2008
Hi everyone,
Ryan is doing great! He's in school and liking it for the most part. He's a little overwhelmed by the pace of 4th grade, but we know he'll do fine. The goal is to make it thru an entire school year without any more.....er..... interruptions save for the occasional trip to NY for treatments. He's got tons of hair now, enough for a daily (and welcome) case of bed-head! Karate is going well and he should finally get his next belt (purple) on Sept. 27th - which means we have to drive home from NY Friday the 26th after his last 3f8 treatment. UGH! But we can't miss this. He's waited too long - almost 2 years and 2 relapses - to achieve this. I better not forget the tissues.
I've spent a lot of time this summer consciously savoring the fun times together - or any times really. Aware of the many times I've read the web site of a child who has passed away, and read the parents comments about "this time last year......" when everything was fine and how could they have known it would be their last summer/vacation/birthday/holiday, etc. together. Not to sound morbid or negative, but just acutely aware of living in the moment. Trying to balance the stress and anxiety which can cause bad moods with the need to enjoy what we have NOW. He's healthy, he's strong, he's living as near normal a life as can be expected under the circumstances. These are the good times. Appreciate them.
Obviously, we meet a LOT of other kids in NY. Every one of these kids is special. They all show a courage and spirit that is incredible. For some the war rages on for years (like Ryan). Battles won, battles lost......and still they fight on. We continue to just expect them to make comeback after comeback. Every time this disease knocks them down, they amazingly get back up. They are a constant presence at the Ronald and at the clinic. We get accustomed to saying "see you in a few weeks" as we get to head home for a break, while they are stuck there month after month. Devin Reid is one of those long-time warriors (www.caringbridge.org/visit/devinreid). He doesn't have NB. He is 19 or 20 and has battled Rhabdomyosarcoma since 2005. He won. It came back. He won again. Then, in one of the cruelest twists of fate, the very treatments that eradicated the Rhabdo, caused a secondary cancer - leukemia. A risk we all are told about. The more aggressive the treatment, the more chemo received, the greater the chances of a secondary cancer. With the odds stacked against him, Devin battled on. Almost a year ago, Ryan spent some time with Devin at one of the events at the Ronald and they became friends, despite the roughly 10 year difference in their ages. They hang out, play computer games, video games, and listen to music. Ryan always can't wait to go find Devin as soon as we would get to the Ronald, usually even before we've finished checking in. I'm sure Devin would have rathered hang out with other teens/young adults, but they are few and far between at the Ronald. As for Ryan, most of the kids he was friends with early on we no longer see there - some because they are fine and living a "normal" life now, some could only be healed in heaven - so this unlikely friendship took hold. Combat buddies. Ryan was dubbed Devin's "mini me" since they both had a similarly shaped bald head, matching scar across it, and matching Ommaya reservoirs. Ryan liked that.
Late yesterday, Devin was flown home to Ohio by air ambulance. That is what he wanted. To go home. His once athletic body (runner) can no longer fight off this disease. He looked great when we saw him last in July. Things can change so fast. Please pray that Devin gets to do and experience all the "home" stuff he wants to.
When we head back to NY in a couple of weeks and Ryan asks if he can go find Devin, we'll have to drag out our "standard" story for these occasions. Devin went home. He doesn't have to come NY anymore. And then hope and pray he doesn't ask more questions or overhear others talking about it. He would be crushed.
Please pray for all our warriors and angels and their families who love them.
Devin usually did his own updates. I'll leave you with his standard closing..........
Thanks for all the prayers and support!
Love,
Norma and Paul
AUGUST 19, 2008
Hi,
I'm going to plagiarize another kid's site again. A few weeks ago I mentioned in an update an NB boy who had relapsed. 4-year old Liam is the son of Larry Witt and Gretchen Holt. Larry is our BoP president and Gretchen the mastermind and tireless driving force behind the wildly successful Cookies for Kids Cancer campaign last year. Below is the August 10th post on his BLOG written by Larry. Sometimes another parent so completely "nails it" when describing aspects of this journey that I feel compelled to share it so that those of you that care to know can......well......know. I'm fully aware that the vast majority of you probably won't read it - at least not all of it - it's long. That's fine, but I hope you do. And I hope you get something out of it. You can pretty much substitute Ryan's name for almost any place you see Liam's.
"................More than a year after Liam was first diagnosed I realize that I have less tolerance for peoples petty troubles and endless whining. I find that I have no need in my life for people who promise the moon and deliver not even a single ray of sunshine. I have less patience for mediocrity and for those whose mere existence is to just exist. The promises of help and support from many that in the end often don't materialize beyond words is something that no longer surprises me but rather is actually expected . At the same time I have met more truly amazing, caring people in the last year than in my entire lifetime. Perfect strangers in some cases who have truly gone above and beyond for Liam and our family. I have no need for those who treat Gretchen and I like lepers because they are sad for us. Those who avoid us because they are sad and focus on our despair versus the miracle that is Liam and the powerful inspiration that his spirit and bravery should be for everyone who has the privilege of knowing him. Don't be sad for us, be mad and motivated by us and by Liam. Get off your ass and do something for Liam, for kids with cancer, or any sick kid for that matter. Don't be sad and please don't say, let me know what I can do to help. If you truly truly want to help Liam and other kids like him and are not just saying it, your opportunity is just around the corner. When Cookies for Kids' Cancer, the non-profit we are creating with the help of some amazing supporters, launches in the coming weeks you will be presented with our answer to the all to common statement of let me know if there is anything you need or that I can do to help. The answer is you can hold a bake sale, encourage a business, co-workers, friends, family, and anyone you can to hold a bake sale to raise money for pediatric cancer research. Liam does not need anything more than he needs better treatment options at his disposal. Helping us help researchers discover the next best treatment for pediatric cancer is how you can really help.
Listen I know our fight and purpose is not for everybody fight but if you are reading this blog then you either care or are just here to witness the drama and misery and that would mean you are a bit twisted. So assuming each of you, more than 300 of you on any given day, are reading this blog because you truly care then we should be able to have more than 300 bake sales in the month of September. You would be doing something to support Liam and to support Gretchen's brain child. Do something to help us fight back against the relentless disease that does not want to let go of our son and the 4 year old kid who you have come to love. Gretchen might not have made it crystal clear in her post from a few days ago when she asked anyone interested in knowing more about Cookies for Kids' Cancer to send her an email because only 3 or 4 of you did so. Funny enough one of the people who did respond was one of those perfect strangers who know of us only through our blog. The email she sent Gretchen was what has kept us going the last few days as our family has been split in two with Gretchen and Liam in the hospital.
The government just approved an additional $30 million a year in pediatric cancer research to be spread across numerous types other next 5 years. A pharmaceutical company would spend twice this amount in one year just to advertise a new erectile dysfunction drug they spent hundreds of millions of dollars developing. Maybe this is why there has not been a new pediatric cancer drug developed in the last 20 years. Maybe this is why kids are treated with chemo agents developed for adults and the reason that most of the other drugs they are given were also never intended or proven safe for them. a few million dollars is not going to make a dent. It is going to take the kind of movement it took to make breast cancer a national priority. It is going to take people standing up and making some noise and spreading the news, getting involved. I appreciate the new support from the government but it is not enough. I am angry at the lack of support for children fighting cancer from those who have the power and the resources to truly make a major difference. The 3 large media networks recently announced an alliance to work together to raise cancer awareness and kicked off a campaign called Stand Up 2 Cancer. They intend to donate the funds raised to numerous non-profit organizations. Guess what? they did not mention a single pediatric cancer and have not aligned with a single pediatric cancer foundation. The coverage also did not feature a single child and yet cancer is the disease that kills more children per year than any other. More media attention is focused on what kids watch, listen to, or play with than what is most likely to take their lives. It is for this reason that we are on a mission. It is the reason we have dedicated what for most is sleep time to the Band of Parents and now to the creation of our own Cookies for Kids' Cancer. I have to tell you though that we are just two people who are locked in a battle with cancer to save our son and can only do so much. I don't think anyone really grasps what we face each day and I cannot expect them to since before we were thrust into the world of kids cancer I never gave it a second thought. I think at the end of the day what we and all families facing pediatric cancer endure is simply not something most can comprehend and for this I cannot blame people for not really getting it. In toady's world most are overworked, starved for time, too busy, and self focused to have anything left over for others. I don't think most people are even consciously aware of their lack of empathy. I know as I have been one of these types of people for years. My eyes have been opened to many realities that I was to blind to see before. I am in awe of those who have given so much of themselves to us and to Liam and especially to those who were not close or did not know us before Liam became sick.
Our town in New Jersey is not even aware of Liam's fight outside of a handful of people because we have done everything we can to make it seem like everything is normal and likely because we are not at all comfortable with appealing for help. Interestingly enough if someone was to look close enough they would see that the edges of our lives are showing signs of wear. For example, we have a pile of decking material that has been sitting in our driveway all summer and now that we are back in the fight in a big way it will likely still be sitting there next summer. I keep dreaming that I am an Amish man and my Amish community is going to show up and hold a barn raising like event like they do in the movies and my stalled year old deck project will suddenly be complete. In addition to the giant wood pile, a 20 yard pile of mulch is sitting next to it waiting for me to find time to spread it and this too is also a sign that things are not as they once were or as they appear to be. Small things that have fallen by the wayside. Not a year has gone by in the last 10 where the flower beds and trees in our yard were not edged and mulched but this year the endless war between grass and mulch beds is apparently being won by grass and weeds and I have no time or energy to step in. I could pay to have it done but that would mean that I was admitting that I could not do it because of our circumstances and for some reason admitting such is difficult if not impossible for me. The flower bed at the top of our driveway has been taken over by the adjacent field and is now full of weeds. It looks as if the house might be abandoned and that is not far from reality. My car's inspection certificate expired 2 weeks ago and the easiest solution at the moment is not to drive it. I am not complaining just reflecting on the ways that somewhat irrelevant tasks and needs are ignored and yet they bother me and stress me each time I am reminded of them as they are symbolic of our mess and the challenge we face. I have done all I can to try and keep up appearances as much for my sake as others but I am losing a little bit of this fight each week and it feels to me that as more things slip through my grasp there are that many more things that I have to hold together and make happen for various entities who depend on me. It truly comes down to decision like posting a tribute of child who has lost their fight on the Band of Parents website or cleaning up a flower bed. No brainer from my vantage point. Lately though I have grown tired of running at 200% and tired of watching my wife do the same. We made a conscious decision to give up one of Gretchen's key clients a week ago since the added workload, stress, and frustration was not something we wanted in our life at the expense of precious time together with our kids. Financially it is a setback for sure but there is no doubt for us as a family that it was the right decision. Our hope is that it will also free Gretchen up to focus more energy on what is really important to us at that is to see Cookies for Kids' Cancer make a meaningful impact in the world of pediatric cancer.
Imagine how hard it might be to put a smile on your face and go about life as if everything was fine when you were just informed that one of the families with whom you bonded and who bought your wife lunch several times when they found out she was in the clinic alone with Liam, just lost their son to the same cancer you are fighting. It is sort of like being spun around in a circle about a hundred times and then being required to show no signs of dizziness or better yet punched in the stomach 2 or 3 times but you are not allowed to show any pain. Hearing that someone you personally know has passed away will rock just about any ones world but imagine if you heard about the loss of a child's life about every two weeks on average. A child whose story you know all to well. Whose smile you have seen as they played with your son. Whose parents you know and whom you consider friends. We have chosen to convert this sadness and despair into vengeance and it will be science we intend to use as a weapon against the instigator of such sadness. We hope that those of you who have opted to observe our journey over the last year have seen and read enough and are now ready to do something to help us fight back and to make a difference in honor of Liam and all that he has endured and will continue to endure. Ok enough emotional release for me for a few months. Stay tuned for your regular scheduled programming about an amazing young prince. Just know that his fathers heart aches with immeasurable pain knowing there is nothing he an personally do to make him better short of hoping that the wizards who have been asked to save the young prince have the right magic potions to make him all better. The father has promised his wife, the brave prince, and the prince's little sister that he will do all he can to provide the wizards with the tools they need to be successful and he must not fail."
AUGUST 7, 2008
Hi all,
ALL SCANS AND BONE MARROW BIOPSIES ARE CLEAR!!!! YEA!!!!!!!
Having completed his 4th round of 3f8 in July, Ryan now gets 8 week breaks at home! This is especially good since school is starting soon. He can have nice long stretches without missing any school.
I spoke with Dr. Kramer today and she feels a little uncomfortable going 8 weeks with no treatment except the Accutane. So after the next round of 3f8 in September we will do a round of low dose Temedor. This is a chemo that crosses the blood/brain barrier (which 3f8 does not) so we feel good about covering all bases so to speak. She also mentioned his CT showing that his liver is somewhat oddly shaped. It's not enlarged and there's no mass, just shaped differently than normal. His liver enzymes have in the past become elevated with higher dose chemo (though not critically) and this could be caused from past chemo. It also can be a result of surgery in the area. His surgeries have been on the right side though I'm not really sure how close to the liver. His surgeon is going to take a look at the CT too. Dr. Kramer and the radiologist do not feel there's any NB present but when we return to NY in September he will have an MRI of the liver, which he's never had done before, just to very sure there's nothing to worry about. (Like I'm not going to worry between now and then!) *sigh*
So after being away from home for 3 straight weeks (camp, NY, vacation), Ryan was finally quite homesick. We returned from vacation this past Saturday and he is very happy to be back sleeping in his own bed again.
Saturday was also Day 1 of the Pan Mass Challenge (www.pmc.org). We headed to the Lakeville water stop to meet up with Ryan's Pedal Partner team. Ryan lasted 3 hours but got so tired we had to leave. We met a few Team Eradicate riders, but apparently a bunch of our team rode in JUST after we left. Rats! We did get to see other NB families we know which was nice - some were riding, some were there to cheer the riders on. These riders are just amazing and have raised a ton of money for Dana Farber. Hats off to all!!!!
Ryan's other semi-big news is that he has new glasses. He's quite happy with them and thrilled to now be able to see what he's been missing!
AND, he finally is back in karate class. He had to stop last October when he relapsed. He's so into it, he is going every night this week. July being such a busy month, we sort of slacked off on his physical therapy routine so we need to get that back on track and s-t-r-e-t-c-h him out. Ironically, we were in clinic today and I read an article in a Dana Farber newsletter written by a cancer dad who happens to be a physical therapist. He talked about how important it is to keep kids in treatment moving to help avoid the tight muscles and tendons caused by treatment. Wish we'd known that 4 years ago!!
Please keep all our NB warriors and Angel families in your prayers.
As always, thank-you for your prayers for Ryan.
Love,
Norma and Paul
JULY 22, 2008
Hi Everyone,
Saturday (7/19) we picked Ryan up from his week long stay at The Hole in the Wall Gang Camp in CT. Ryan had a TERRIFIC time at camp. He got to go up in a hot air balloon (tethered the whole time), spend time in the pool, try out archery, fishing (he caught his first fish!), and he made a video which I'm told is being submitted to Disney for some kind of contest. He also got to sing "We Are the Champions" on stage, AND we hear he did the Papelbon Dance with another counselor in front of the whole dining hall. Red Sox fans will know what that is. PLEEEEASE let there be pictures of that!! He never got homesick. According to his counselors, he was a model camper and they couldn't say enough nice things about him. Speaking of the counselors, let me just say how wonderful THEY are. It's a huge leap of faith for cancer parents to leave their child for a week at a camp but we really felt good about the people we were leaving him with. They are just amazing and the Camp itself is spectacular. Forget Boy Scout camp - this is in a whole other league!! Oh, and just for the record, I waited nearly a full 24 hours before I made my first call to check on him. ;-) BTW, Matthew will be attending sibling week at the same camp in August. He can't wait since he got to see it when we dropped off and picked up Ryan.
After we picked him up we had a chance to have a nice visit with old friends who live near the camp. They very kindly put us up for the night saving us the time (and gas) of driving all the way back to MA and then turning around on Sunday and driving all the way to NY. A HUGE thank-you to Lois and Matt!! We had a great time!
And now we're in NY and back to reality and another round of 3f8 treatment plus a full work-up with scans and bone marrows. Monday was his brain MRI (report today was all clear!) and then treatment which went fine - no drama like his first day last time! After this round, we stretch out to 8 week breaks instead of just three. It will be nice to not have to travel for 2 whole months BUT it also makes us nervous to not be doing any treatment for two whole months. PLEASE, PLEASE pray for ALL clean scans. Every NB parent knows the fear of scan week. It's magnified tremendously when your the parents of a kid who has relapsed before.
On to more pleasant things. A couple of weeks ago, Ryan and the rest of us got to participate in the 2nd Annual Beckett Bowl benefiting Children's Hospital. Red Sox ace Josh Beckett was of course the headliner. It was incredible! Ryan once again got lots of TV camera time. I even feel badly that the other kids there didn't get on camera more. They seemed to zero in on Ryan for some reason. Here's a News Clip:
We were the 2nd family to arrive and they asked Ryan to roll out the first ball with Josh - which I think is in the above news clip. We only got to see it ourselves when we watched the news since there was a wall of media between us and Ryan. Then they had all the families at one lane to bowl, which you can imagine was pretty crowded, so they told us and another family to move down to Lane 4. Guess who was bowling in Lane 3? Josh Beckett!!!!! Josh helped Ryan bowl several times, even letting the kids use his own bowling ball (which looks like a giant baseball). It was too heavy for Ryan to even pick up but Matthew used it. The Children's photographer should have lots of GREAT pics!! Both Ryan and Matthew were on cloud 9, high-fiving and doing that knuckle thing with Josh all night. Ryan amazingly enough bowled a strike at one point (thank goodness for bumpers!). Matthew turned to Josh and said "Hey Josh. Ryan just bowled a strike!" - like he was talking to his best bud. More high-fives. Wow.
All the athletes were SO nice. There were players from the Celtics, Patriots, and Revolution in addition to several more Red Sox players. Ryan and Matthew got their T-shirts signed by a zillion of them. Now the challenge is to look at this scrawl and try to figure out whose signature is whose!!! :-) Ryan did get tired eventually so we were the first to leave. It was a thrill of a lifetime though for both of the boys.
Ryan moments: (1) A couple of weeks ago I was having really bad stomach cramps - something I ate I suppose. Anyway, I was telling Ryan it was bedtime but he said "No, I'm staying here with you". I told him I'd be fine and he needed to go to bed. He said more emphatically "No. You never leave me when I'm in pain, and I'm not leaving you." (sniff, sniff)
(2) Last week I broke my toe. On Monday during his treatment I was lying in bed with him as per usual. He likes to drape his legs over mine during the treatment when he's feeling awful. Today he asked me if the leg his were resting on was the one with the broken toe. Even though he was in so much pain, he was still concerned about ME and didn't want to hurt me. (sniff, sniff) His nurse, Cat, witnessed this and couldn't believe it. I can.
I haven't mentioned other kids in updates in a while but there are a few in need of prayers.
Our Band of Parents president and his wife just got the horrible news that their son Liam has relapsed. Liam's mom Gretchen you'll remember from the Cookies for Kids Cancer fundraiser. She was the driving force behind it and spent countless hours making it a success.
This is his Blog:
(Brody Hurt). Brody's disease has progressed and he's recovering from some really nasty chemo.
Eli Horn (www.carepages.com and type his CarePage Name: EliRHorn). Eli is having a very tough time recovering from complications/infections after bowel obstruction surgery a few weeks ago.
As always, thank-you for your prayers for Ryan and all our NB warriors. Please also remember the families of our NB angels.
Love,
Norma and Paul
JULY4, 2008
Hi all,
Ryan completed his 3rd round of antibodies last week (6/23-27). He did okay except for the first day. He gets some heavy duty pain killers during treatment (dilaudid) and he also usually gets a pre-emptive dose of benedryl as well since he's so prone to hives. These dilaudid "rescues" are usually given at 10 minute intervals but sometimes sooner if need be. Anyway, he got 1 rescue and a benedryl, then 5 minutes later he got a second rescue. Now he has never in the past - that I can remember anyway - gotten any rescues until I ask for it. This time, the 2nd rescue was given without me asking. I remember thinking it was awfully soon. This was a nurse we hadn't had before and I assume she probably looked at his rising heart rate and decided it was needed.
Well within a very few minutes I noticed his oxygen level dropping. He always uses a "blow by" which is just a tube he holds with oxygen blowing in his face. He doesn't always necessarily need it but he likes it, sort of a comfort thing mostly. So even with the blow by, he was dropping fast so I called for help. The last oxygen level I saw on the monitor was 74% - then it just stopped registering. His BP dropped dramatically as well. So now there's a crowd in the room and they're trying to rouse him - not responding. They ended up giving a dose of Narcan which is a drug that reverses the effects of narcotics.
It worked, which is obviously good. But, the bad part is that now that the narcotics are neutralized, the pain comes back BIG TIME. He just had to ride it out with nothing more than hot packs and me and his nurse to comfort him (different nurse by the way). He eventually fell asleep. I had a good cry.
A short time later, Matthew, who has been playing in the playroom this whole time, pops in and has no idea what's just transpired. He's such a good big brother (though Ryan would argue that point). Without giving Matthew all the gory details, the nurse gave him the job of watching the oxygen monitor and told him to call her if it dropped. It was now at a very nice 99%. Matthew asks "So if it drops to 98 I should call you?" No, just if it goes below 95. So he sits there reading his Harry Potter book and every few minutes he diligently gives a quick glance at the monitor, obviously taking his job very seriously.
A couple hours later we're thinking we're good to go but now Ryan spikes a fever. This can be caused by the 3f8 but he also still has his medi port so they have to be careful of a line infection. We have to stay and get a dose of antibiotics just to be safe. Someone mentioned a possible admission if the fever didn't go down. I said not unless one of you is taking Matthew for the night since they don't allow sibs inpatient. Thankfully, it did go down. We didn't leave the clinic that day until 7 p.m. Needless to say, a very scary experience but I have to say they were very much on top of it. Back at the Ronald he slept right thru till morning except for a 20 minute period where he woke up long enough to eat a few Pringles. The next morning I asked how he was feeling and he said "Fine. Why?" I mentioned him having had a rough day the day before and he said "I did??" Isn't amnesia wonderful!
The rest of the week went MUCH smoother. And he had to wait the full 10 minutes between rescues!
His appetite has been down for a while and they noticed that he'd lost a couple of pounds since were in NY 2 1/2 weeks earlier, so they put him back on Megace (appetite stimulant). It worked great for him in the past so hopefully we'll plump him up a bit again. He also started his second round of Accutane. I hate that stuff because it dries his skin out so much and makes him very sun sensitive. His skin peals and his lips crack. Just what we want before he heads off to Camp!!
He's getting more and more excited about going to camp, literally counting the days. We drop him off on July 13th and pick him up on the 19th.
Since he's been off chemo for a while now so his hair is finally starting to come in nicely. :-)
We're now attempting to strengthen him up a bit. He's still not very strong or agile for his age. I know, I know. He's been through a lot BUT even comparing him to other cancer kids we know who've been through just as much if not more body slamming treatment as Ryan, he's still way behind. With the help of our neighbors across the street who are both physical therapists, we've started a little PT at home. Stretches for his VERY tight muscles/ligaments/tendons and also some exercises for strength. In August we plan to put him back in karate too which should also help. The goal is to have him be able to participate more in the games the kids play at recess when he goes back to school. He's previously had a hard time keeping up with the other kids - at one point referring to recess as the worst part of school.
So our little celebrity is once again getting an opportunity to rub elbows with the rich and famous. He is one of 6 kids invited to be Red Sox pitcher Josh Beckett's guest at the 2nd Annual Beckett Bowl, a celebrity bowling event benefiting Children's Hospital. It's next Thursday. Paul, Matthew and I get to be part of his "entourage" (ha-ha). There is a photo opportunity and Ryan will get to bowl and get Josh's autograph. Should be fun.
Last but not least....
We return to NY on 7/20 for his next round of antibodies as well as his next set of scans and bone marrows. The anxiety level is already rising as it usually does when scans are approaching. So please keep praying that all his scans and bone marrows continue to show no evidence of disease!
Thank-you.
Hope everyone has a great 4th of July.
Love,
Norma and Paul
June 18, 2008
Hi Everyone,
Our big 2 1/2 weeks home is winding down and we are getting ready to head back to NY on Sunday for Ryan's 3rd round of 3f8. Ryan also finished up his first round of Accutane the other day. It dries his skin out horribly and his lips are chapped and cracked, but it's looking better already. Today we start his GM-CSF shots. Yuck!
The boys' last day of school was this past Monday and it's summer vacation time!! They are enjoying sleeping in a bit and staying up later. Matthew will be coming to NY with us for the week.
We just had a very successful yard sale this past Saturday to benefit Band of Parents. There are many, many thank-you's to give out to the many who donated items to be sold and who also showed up to help set-up, stayed to help with the sale and also hung around to clean up. Too many to mention all by name but a special "extra mile" nod to my brother Bob and his family for lots of donated items and many, many hours spent helping me manage the pre-, during- and post-sale chaos. Also, the Cooney family who not only donated items, bought items, stayed the day AND also ran a lemonade/snack stand! As I said, so many others helped/contributed it would take the whole page to list them all. A HUGE THANK-YOU TO ALL!!!
Cute side note. Our little neighbors across the street and a couple doors down set up their own lemonade stand, obviously unaware of ours at first. We were very touched when the came over and donated the proceeds of THEIR stand to BoP. Way to go guys!! While you'll always get the professional yard salers who can't resist trying to chew you down on prices no matter what, there were also many who bought something and wouldn't accept their change. Everyone who stopped by received a fact sheet on BoP so even if they didn't buy anything, they are at least enlightened! All in all, a ton of work but well worth it. Never far from my thoughts that day was the Monroe family. Little Marissa had earned her angel wings the day before on Friday.
Please, please take a moment to visit her caringbridge and read today's (6/18) Entry. It's about the day of her funeral but don't let that deter you. It is so uplifting it is well worth reading. It will give you goose bumps.
So, for all our angels and warriors...........between the yard sale and the donations-in-lieu-of-birthday presents from the boys' respective birthday parties, we've made in the vicinity of $1,900 for Band of Parents!!! Our heartfelt thanks to all who helped make this happen!
July will be a busy month. Ryan will be away from home for 3 straight weeks!!! The week of the 13th he is off to the Hole in the Wall Gang camp in Connecticut for the whole week - all on his own. He's sooo looking forward to it. I know it'll be a great experience for him but we also hate the thought of being away from him for so long. He'll be fine....we'll be a wreck! Then we pick him up from Camp and head straight to NY for his 4th round of 3f8 (as well as s-s-s-scans I believe), and then from there we head straight to Cape Cod for our vacation. We will end the vacation the same way as the last 2 years by driving to the Pan Mass Challenge rest stop to cheer on the thousands who are riding to raise money for the Jimmy Fund, including Ryan's Pedal Partner team, Team Eradicate.
BTW, so many families rely on Corporate Angels to fly them in to NY for their child's treatment. We have at least 22 families in the DC/VA/MD area who have depended on the AOL Shuttle for years for travel between DC and NYC. This flight has been cut back to a Tues-Weds-Thurs schedule and will soon be phased out altogether. Please encourage any friends/family/neighbors you know that have connections to a large company w/corporate air transportation to consider joining Corporate Angel Network. Flights are only made available for cancer patients when the corporation has already scheduled a flight for business reasons and only if empty seats are available. It is a win-win for the company and cancer patients!
They can go through the Website
Good news on the Conquer Childhood Cancer Act: The "Caroline Pryce Walker Conquer Childhood Cancer Act" passed the House of Representatives on June 12, 2008 by a vote of 416-0.
Companion legislation in the United States Senate (S.911), sponsored by Senator Jack Reed (D-RI), cleared the Senate Health, Education, Labor and Pensions (HELP) Committee unanimously in November, 2007. The Senate version of the Conquer Childhood Cancer Act currently has 63 co-sponsors; a full Senate floor vote on the bill is expected this summer.
Reminder.....when shopping on-line, you can earn money for Band of Parents AT NO EXTRA COST TO YOU. Visit Band of Parents and register (it’s free). Then, shop online at over 680 brand name stores and a portion of each purchase will be donated to Band of Parents! It DOES NOT add one penny extra to your purchase price!
As always, thank-you for your prayers for Ryan and all our NB warriors as well as the families of our angels.
Love,
Norma and Paul
P.S. To any of the locals who caught the article in the Eagle-Tribune the other day regarding Ryan getting to meet American Idol winner David Cook, I just want to clarify something that was miss-stated. The article said that Ryan got an invitation to come down to the Early Show that day from David Cook himself. This is incorrect. We received the invitation through Candlelighters of New York and it's president, Barbara Zobian. David Cook had no idea Ryan or any "cancer kid" would be there. Which I think makes the spontaneity and genuineness of Ryan's encounter with him all the nicer!!!
Special Letter of June 7, from Norma:
October 20, 2007 was the day we learned of Ryan's tumor in his rib. We sat in the waiting room for hours waiting to talk to Dr. Kushner to get the scan results, not knowing this news was coming. We waited with another family, the Monroes, who also were anxiously awaiting scan results. We went in first, got our kick in the stomach and left. We learned the next day that the Monroe's daughter Marissa had also relapsed. Both were small relapses - Ryan's rib, Marissa's was next to her eye.
Fast forward nearly 8 months later. Ryan is NED and Marissa, who just a few days ago was full of energy and life, has left NY by med flight to return to her home in Michigan. Her disease has exploded throughout her body, she needs constant oxygen support and there are no further treatment options. She is weeks shy of her 3rd birthday. Just a few days before they left home for NY for theses scans, Marissa's Make-a-Wish was completed - a backyard swimming pool that she barely got to use.
Why does this vicious disease tear thru one child with a vengeance and not the next? Why does one child respond to treatment and not the next? Why are there still more unknowns than knowns? Why can our government find billions to fund a war in Iraq but only pennies to fund pediatric cancer research? Why are desperate parents reduced to repeatedly begging family and friends to fund research? Where's the outrage?????? Why is our country so complacent?? There were 2,223 childhood cancer deaths in 2004. Pockets of measles cases popped up in several cities around the country a few months ago. If there was a another measles outbreak that killed 2,223 children, it would be the lead news story for weeks, every network would be interviewing scientists, doctors and government officials grilling them on what they're doing to end the carnage and asking HOW COULD THIS HAPPEN IN AMERICA. Why is it okay in this country for a child to die from cancer ? Okay, cancer is more complicated than measles, but pick a disease, any disease. Cancer is still the number one disease killer of children in the US. Why can we never get through a holiday or birthday without wondering if it will be Ryan's last.
S C R E A M I N G
MAY 31, 2008
Greetings from The Big Apple,
We've been in NY all week for Ryan's 3F8 treatment. It has gone okay - about as expected anyway. Pain, hives, long days at the clinic, sleeping for hours and hours.....the usual. His worst after-effect is the hives. He gets them mostly in his mouth and his lips swell up unbelievably. Everyone calls him Mick Jagger. And to think those nuts in Hollywood pay lots of money for this effect?!?!?! We will be staying on until next Tuesday. Monday is for his fifth day of treatment (since we missed a day because of Memorial Day) and then on Tuesday he has bone marrows.
We thought we'd like to try and get some more stem cells out of him now that he's NED. We still have some at Dana Farber but more is always better. However, a blood test showed he really doesn't have enough to even bother. Hopefully that will change as his bone marrow recovers more and more, especially since he's not on chemo anymore. We'll try again at a later date.
So what do we do in NY when we're not in clinic or dodging falling cranes???? We head down to the CBS Early Show to meet new American Idol David Cook!! The Candlelighter's NY president Barbara Zobian sent an e-mail invitation to the families she knew at RMH. Oddly enough, we were the only ones who went - those that didn't have to be at the clinic early I guess wanted to sleep in! Ryan's a huge American Idol fan and we had a great spot for viewing his outdoor mini concert on Thursday. David spotted Ryan's Red Sox cap from the stage and pointed to him saying "You're brave to wear that around here." Later after he sang he was standing near us and Barbara scooted Ryan under the rope - without the Red Sox cap. David spotted him right away and came up to him, spoke to him even saying "you're my hero", gave him a hug, signed an autograph and posed for pictures with him. He was REALLY, REALLY nice. It was taped on Thursday but aired today. One of the little "coming up next" promos showed the part where he gave Ryan the hug. Waaaaay cool.
  
HERE IS THE EVENT, From Norma's Camera. 4.5 Megs, WMV format. © N.P. Reardon and For-Ryan.org, 2008.
Thank-you for all the birthday wishes posted in Ryan's guestbook. The Amazing Super Ryan turned NINE on the 20th!! Every birthday is a gift and we try not to focus on the fact that this is his fifth birthday in treatment. He'll have his laser tag party when we return home.
"Ryan Moments"
Ryan had a substitute teacher a couple weeks ago. She gave the class a little art project to draw a pet alien. Ryan brought his picture home to show me. He explained that his alien pet had special powers. I asked, "What powers?" Ryan replied, "He can cure any disease". I asked what his alien pet's name was. He said "Hope". (sniff, sniff)
On the morning or his birthday he opened 3 cards that had come in the mail the day before. Two of them contained gifts of money. He scooped the bills up and said "I know where this is going." "Your bank?" I asked. "Nope. Band of Parents" he said. At the surprised look on my face he added "Well, I AM a part of it y'know. An IMPORTANT part". (sniff, sniff)
In recent weeks I have asked for prayers for Emily Adamson. Emily became an angel the day after Mother's Day. Please keep her parents and her twin sister Mary Grace in your prayers as they endure the unendurable. Also, take a moment to visit Her Caringbridge Site. The May 13th journal entry contains "A Bereaved Parent's Wish List". If you ever find yourself in the situation of knowing a parent who has lost a child, this list is very helpful in understanding the grief process and how to be supportive. I imagine much of it could translate to the loss of any loved one.
Here are a couple of ways to honor Ryan, Emily and all our angels, and other NB fighters.
Earlier this month we received good news from our former BoP president on the Conquer Childhood Cancer Act. For anyone that missed it...... "Just wanted to let you know that Rep. Deborah Pryce's (R-OH) pediatric cancer legislation was unanimously approved today by the House committee with jurisdiction over NIH. Next stop is the House floor."
And now we need everyone to go to Curesearch.Org and send a letter to your 2 Senators and your Representative to APPROPRIATE the money for the Conquer Childhood Cancer Act. Because it has such bipartisan support, we want the money in THIS year's budget to begin saving lives as soon as possible. It only takes 5 minutes as you simply type in your zip code and your reps pop up. Click on the "talking points" and ZINGO - your letter is e-mailed just like that!
And...
Our new Fundraising Opportunity.
The link above will be a part of our Band of Parents website from now on. What is it ??? Check it out!!! It's really cool.
It is a company called Get Etched. They provide granite etched keepsakes for business gifts, corporate logo products, "wall of fame" products for schools, hospitals, buildings AND personalized photo products for families!!! We receive a large percentage directly deposited into BAND OF PARENTS fund for each order! The program also provides a "leveraged" way for our group to make money!!! If you have a service organization, sports team, place of business, etc. that you share Get Etched with and they set up an ordering page for themselves, like our page, they receive a profit, AND we receive a profit as the referring organization. So if your church wanted to do a fundraiser to help the church AND band of parents we both win!!!!
I guess I've babbled enough.
As always, thank-you for your prayers for Ryan and all our NB warriors.
Love,
Norma and Paul
MAY 5, 2008
Hi Everyone,
Round one of 3F8 is done. The week went okay, though he experienced different effects this time than when he did 3F8 before. His pain during the treatment was less, hives were less intense but he had A LOT of residual foot pain that lasted all Monday night and into Tuesday morning but got better as the week wore on. This side effect is apparently more common in older kids - and now he's older! So they started him on a drug to combat this. It needs to build up in his system to be most effective so we will have to start it a few days before his next round to hopefully avoid this residual pain which can be pretty intense.
For the first four rounds we will be on a schedule of 1 week on, 3 weeks off. After round 2, they will do bone marrow biopsies and he will start several rounds of Accutane again as he did back in 2005. Not happy about having to do that thru the summer as it dries the skin out horribly and makes the skin extremely sun-sensitive. We'll be slathering him up till he's as slippery as a watermelon seed!!!!
Though he missed a couple of games, Little League is going well. We may be able to get him back to karate again soon as well.
As per usual, it was a week of many ups and downs. We were thrilled that our friend Owen's scans showed dramatic improvement after high dose chemo. He had had progression at his last scans a few weeks ago. Please keep him in your prayers as he will start yet another round of high dose chemo this week and need another stem cell rescue. Erin Keenan and Ryan Reagan remain NED!!
A little boy we know from Nashua, New Hampshire relapsed. Every parent in this position knows that relapse is even more emotionally devastating than initial diagnosis. Please keep Ethan in your prayers as well.
And our very good friends, the Solloways, are in NY today for a consult with the neurosurgeon. Their daughter Jenna suffered a brain relapse a little over a year before Ryan's. She's been clear ever since but a recent brain MRI showed a questionable area which will be biopsied soon. Jenna and Ryan are both "class of 2004" having been originally treated at Dana Farber that year. Please pray that this turns out to be nothing and she can go back to school, dance class and being a little girl.
A few days shy of her seventh birthday, Courtney Saundershas earned her angel wings. Please pray for peace and comfort for her family. .
Ryan's 9th birthday is coming up on the 20th. The last 2 birthdays were spent in NY for treatment. This one we'll be home for and he will finally get that big kid party he missed out on last year. He picked laser tag.
As always, thank-you for your prayers for Ryan. With all the heartbreak we see around us, our prayer is for many, many, many, many more birthdays to come for our sweet, beautiful, courageous, Amazing Super Ryan.
Love,
Norma and Paul
APRIL 23, 2008
Hi all,
We got the official word from NY yesterday that we are a "go" for Ryan's 3f8 antibody treatments to begin next week. Today we start the shots that go along with it.
Our little celebrity is handling his new-found fame with aplomb. We're still bumping into people who say "I saw you on the news!" He just smiles and says "yeah". BTW, tomorrow is the last day of the e-bay auction for the Ortiz jersey. The bidding is up to just over $80,000!!!
Ryan played his first Little League game of the season last Sunday and got a couple of hits and fielded a couple of ground balls - and had fun! And yes, the screaming red batting helmet made it's debut. :-) The boys are enjoying school vacation week together.
On another note..........
We have met many wonderful, caring people since Ryan's diagnosis. One such person is the mom of Ryan's classmate Bronagh. Her mom, Olivia LaGrassa called our home out of the blue one day many months ago and offered to stop by and drop off some holy water her mother back home in Ireland had gotten from a shrine there. Her mom had originally gotten this holy water for Olivia as she is a 10-year brain tumor survivor. Since then, and even though she herself has been on oral chemo for about a year now, she nevertheless reached out to us and has very kindly brought us wonderful meals and offers of help. We were then surprised once again when she told us that her annual ride for the Brain Tumor Society was being dedicated to Ryan. Their ride team is now renamed "Olivia and Ryan's Fury". Their fundraising goal for the May 18th ride is $10,000. We feel very honored that Ryan has been included in this worthy cause for the Brain Tumor Society. Ryan's own experience with his brain tumor last year, the fact that his young cousin Leah is also a brain tumor survivor, plus the loss of a good friend's husband to a brain tumor last summer, gives his association with the Ride that much more meaning. Please visit the LINKS to the Team's Page with more info about donating, joining the team, becoming a virtual rider, etc.
and Olivia's Personal Page
I know we're always picking your pockets (when we're not trying to suck blood out of you that is!) but whatever support you can offer is greatly appreciated. And please feel free to forward the info to your family and friends.
Thank-you!!
Please continue to pray for our NB friends: Austin Melgar who remains in a coma.
And (Marissa Monroe). We and Marissa's parents found out the same day last October that they both had relapsed. Scans done a couple of weeks ago showed disease progression. Her dad was one of the Loneliest Road riders.
And Owen Lea who relapsed again recently and is recovering from high dose chemo.
And Zachary Morris (no web site) who also has disease progression.
Marissa, Zach and Ryan all had these recent scans done the same week. This time, we were the fortunate ones. It's hard to enjoy our good news when so many others have had the rug pulled out from under them yet again.
As always, thank-you for all your prayers for Ryan.
Love,
Norma and Paul
PS:
Austin Melgar's family posted this update today (4/25).
"I am at a complete loss of what to say but will write something appropriate later. Austin took his last breath at 9:59 pm tonight. He passed peacefully in the comfort of the family bed surrounded by his family. He had no fear and was in no pain and had no measurable cancer left. Whatever is left will not hurt him now. One of the greatest kids I have ever known is gone but will live on in the spirit of the dozens of other greatest kids who knew him."
Thursday morning, Austin was brought home by ambulance from a Detroit hospital. Thursday night, two hours before his death, a prayer circle that started at Austin's side wound its way through the Melgar home and circled the entire house.
Austin's dad Tom has been an instrumental part of the Band of Parents and we are deeply saddened by the news. Austin fought valiantly over the years and was an inspiration to his family and those who knew him.
Norma
Member, Band of Parents
www.bandofparents.org
APRIL 17, 2008
Hi everyone,
Well the day started out normal, got interrupted with an unexpected and annoying need for blood work in Boston, but turned out spectacular after all.
Dr. Kramer called mid-morning to say that blood for Ryan's HAMA test was never drawn when we were in NY last week. This needs to be confirmed as negative to start 3f8 antibodies. I wasn't happy but I picked up Ryan from school and drove to the Jimmy Fund Clinic so it could be drawn and Fed Ex'd to NY.
All you locals (and probably anyone who watches sports news) knows about the David Ortiz jersey that a (Red Sox fan) construction worker buried in the cement at the new Yankee Stadium. It was dug up to remove the alleged "curse". I'm sure there were those who wanted to burn it, but in a very gracious gesture, the Yankees gave it to the Jimmy Fund to auction off to raise money for Dana Farber. Soooo, we were about to leave the clinic when Ryan decided he wanted 10 more minutes in the playroom. As we sat there, Lisa, the Child Life Specialist came over and told us the "unveiling" of the shirt was taking place in a few minutes downstairs and that they wanted a Jimmy Fund kid and an adult patient to help with this unveiling. Ryan obviously jumped at the chance. So Lisa found him an Ortiz jersey of his own to wear and off we went to the Red Sox Gallery on the lower level of the building. We met Mike Andrews, who long-time Red Sox fans will remember as a pitcher for the team in the 60's. He now heads the Jimmy Fund. With all the local TV stations and newspapers present, a smiling Ryan and the other patient lifted the gritty, grimy, cement encrusted, jack hammer riddled shirt out of it's box. Instantly, there were so many cameras going off you'd think Britney Spears had shown up. After the jersey was put away, all the TV guys swarmed Ryan with microphones in hand and interviewed him.
It was something to see!! I couldn't hear a word of what was being asked or how he responded. My only purpose was for giving his correct name spelling, age and where he lived. I think I need a t-shirt that says "STAFF". The piece should be on the news this evening (Thurs). I saw NECN, Ch. 7, Ch. 4, Fox 25 and a few other TV stations, plus the Boston Globe. Oh, and AP was there too.
And HERE IT IS!"Ryan Reardon, an 8-year-old Red Sox fan and cancer patient at Dana-Farber, helped unveil the jersey Thursday at the hospital. He said he felt good about the Yankees, since they're helping the Jimmy Fund. When asked how long he expected that to last, he replied: "Just today."" (© Associated Press)
..And here is one from the Herald, with a photo and VIDEO!
Two more links. WBZ has some of the interview.
Boston Channel
WBZ
So, if his HAMA test had been done in NY as it should have been, and if Ryan hadn't asked for 10 more minutes in the playroom, he would have missed out on this great experience. As they say, "everything for a reason". I have to say, he was so calm and at ease even with all those TV cameras and lights. It was like he'd done this a hundred times. The Amazing Super Ryan!
AND, if that's not good enough, we also got word today that Ryan's bone marrow biopsies and aspirates are all clear too. The only thing left is his urine markers. Because of the delay in getting those last test results in time, we will be delayed one week for his antibody treatment. We will go the week of the 28th instead. He needs to be considered in full remission to qualify for the protocol they want to use so every last test has to be in.
Oh, and for any rabid fan out there with a few thousand lying around, the jersey is on e-bay until next Thursday!
That's all folks!!
Love,
Norma and Ryan
P.S. to John and Angela. Ryan is working on a more appropriate "Thank-you" to send, but I just wanted to let you know your package arrived to BIG SMILES!!!!!!!!
APRIL 11, 2008
Hi Everyone,
We can finally exhale. For the first time in over a year, Ryan's scans are all clear!!!!!!!!!! There are no words to describe our relief. He does still have bone marrow biopsies tomorrow and a week or more to await results, but since nothing showed up on the MIBG scan, we feel pretty good about those too. Dr. Kramer was almost giddy giving Ryan the news. Yes, she spoke directly to him when we walked into the room. Hard to say whose grin was wider.
We will be heading home tomorrow after the bone marrows JUST in time for Matthew's belated birthday party on Saturday.
The new plan, as we anticipated, is for Ryan to go back on the 3f8 antibodies the week of April 21st. NO MORE CHEMO!!! YAHOOOOOOOO!!
And, last but not least, he can finally return to school next week. He was absolutely thrilled to hear that! He wants to just show up unannounced on Monday to surprise his classmates.
So, we have good news, a plan moving forward and one happy boy! In the NB world, that's about as good as it gets!
Amazing Super Ryan moments: on the train down to NY I told Ryan we wouldn't be using his medi port for his nuclear medicine injections and that he would get an IV in his arm. He just said "okay" and went back to his DS. Thinking he didn't really understand me (most kids practically need to be put in 4-point restraints for an IV stick, right?) I gave the whole explanation about how we didn't want another false negative scan as when they thought his rib tumor was the tip of his line lighting up (for 8 months). "Okay, okay Mom. It's no big deal. I'll get an IV." I shut up.
Then the other morning we were getting ready to leave for the hospital and he wanted to only wear his sweatshirt. I told him the jacket would be better because it was windy and the jacket would be more windproof. He said, "Mom, I've been dealing with cancer. I think I can handle a little wind." I shut up.
We are eternally grateful to everyone for all their prayers for Ryan. We know all too well that the tide can turn very quickly with NB so please keep praying for him and all our NB warriors. Especially.....
Owen Lea Owen and his family were blind-sided by the unexpected progression of disease to his bone marrow. He's finishing up a week of ICE, an extremely potent chemo cocktail which he has tolerated amazingly well. Pray for a really good response.
Austin Melgar who has been unresponsive for about 3 weeks.
Thank-you.
Love,
Norma and Paul
APRIL 7, 2008
Hi all,
Tomorrow (Tuesday) we leave for NY and the dreaded scan week. Please keep those prayers going. This kid needs a break!!!
In case I haven't mentioned lately how amazing he is, here's a little beauty. Today, out of the blue, he comes to me and says he has an idea. "You know how I've been battling cancer now for 4 years? Well, I was thinking there's other kids out there that are too and new ones every day. And you know how you take pictures of me all the time? Well, how about we take all those pictures and make a video to the music of "We Are the Champions". What a kid!!! Now he has no idea that others in BOP have been working on such a video/slide show featuring BOP kids for some time (not to that music as far as I know). He also has no idea how technically challenged Mom is, so this may take some time......but he really wants to do it.
My other Proud Mama Moment came today also when Matthew, who is FINALLY getting his kid birthday party this Saturday (6 months late), again suggested that instead of presents, people should bring a donation to Band of Parents. Ya gotta love these guys!
Quick update on the Conquer Childhood Cancer Act: We're up to 57 Senators on board. Thank-you to all who have taken a few minutes to write to their Senator(s) and also forwarded the info to others in other states. We still need a few more though. Here are the links again:
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
We will update again when we have some scan results.
As always, thank-you for your prayers for Ryan and all our NB warriors.
Love,
Norma and Paul
APRIL 1, 2008
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
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
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
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
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.
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
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
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
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
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
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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