Ongoing updates of the Relapse episode: This page is appended as new material arrives : check back often! Latest News is added as it arrives!
DECEMBER 22, 2007
Hi all,
After a full week inpatient, Ryan was finally released late this past Wednesday. The snowfall the next day was so beautiful. That on top of earlier snows and it is definitely a winter wonderland around here (nyah, nyah all you southerners). Perfect for summoning up some Christmas spirit, which has been a bit scarce. Can't say we'll be sorry to put 2007 in the rear view mirror!
Anyway, Ryan felt pretty well most of the time he was inpatient, had no fevers after the first 24 hours and nothing grew out of his blood cultures!!! Whew! They kept him on IV antibiotics just in case and sent us home with oral antibiotics for 2 weeks. The thing that kept us there so long was his white count, which would inch upward one day and drop back down the next. He finally hit the magic number on Wednesday and we bolted before they could change their minds. All along he has been requiring frequent platelet transfusions and one red blood transfusion. Today we went to the Jimmy Fund clinic and sure enough his platelets were only 10, so another transfusion.......his 3rd this week! We go again on Monday, Christmas Eve and he'll probably need another one then too. Though he met the criteria for being released, his white count is still low and we still have to be careful about exposure to infection. So, as I've said before, his bone marrow is very beat up and tired and takes FOREVER to recover from chemo now. Please pray that when we return to NY in early January, his scans will show that this tumor is gone and the doctors will have a good, non-chemo plan up their sleeves.
Ironically, our roommate the first few days was a little 2-year old girl just diagnosed with NB. She was in the middle of her first round of chemo. She went home last Saturday but is now back with a fever and neutropenia, just as Ryan was. Her parents and I talked a fair amount. Of course I gave them the "You can do this" pep talk. It sucks, but you can do it. But when they started asking questions about Ryan's story and heard the highlights (and all too numerous low lights) of his odyssey, the pep talk sort of falls flat. Hard to put a positive spin on relapse. The only real advice I could give at this point, which I wish someone had given us, is to research all your options and make INFORMED decisions. Please keep Shannon and her family in your prayers.
Lots of good news on the fundraising front. An angel on earth has emerged and over the last few weeks has made 3 very generous donations!!!!! This angel wishes to "fly under the radar" so I can't give details but because of this incredible generosity, we are now SO MUCH closer to our goal. Not bad for a group that didn't exist 6 months ago and only started fundraising in earnest in September with a handful of dads biking across the country in the Loneliest Road campaign. Every donation, large or small, has helped and we are humbled by the outpouring of support this effort has received. Our IMMEDIATE goal is HU3F8, but of course our ULTIMATE goal is a cure and The Band of Parents will not rest until THAT goal is met!!
And, as the cherry on top, just last night I received the following e-mail from our BoP president It is an e-mail he received from Dr. Cheung. Christmas has come early!!!!!!!!!!
I want to share some good news regarding the 3F8 initiative. We have obtained a commitment from a biotechnology company that provides both mission and experience to develop the 3F8 mouse antibody program. With their expertise and input, I expect the 3F8 chimerization and 3F8 humanization to rapidly move forward. This development is a direct result of the inspiration provided by all of the families and children across the nation in our care. We thank you for your passion, determination, and energizing efforts that uniquely helped to accelerate this initiative and make this possible.
You have collectively and literally moved "mountains" and have given many something to be thankful for over the holidays. As we bring in the year 2008, your "magic" has only just begun. Please share this note with all who have helped bring us to this step. I will be providing a more detailed update in an evening meeting planned for January 24, 2008.
On behalf of all of us at MSKCC, I wish you all a peaceful and loving holiday season.
Please post
Thanks
Dr. Cheung
Wow! We are so grateful for this gift of hope. We are also grateful that we are all together this Christmas. January will mark the 4th anniversary of Ryan's diagnosis. We of course don't know what 2008 will bring. Hopefully no more unwanted surprises. Ryan was actually reflecting on his life last night. He said "I've really been through a lot y'know". Understatement of the century!
Have a wonderful Christmas everyone and a happy, healthy New Year.
Love,
Norma and Paul
DECEMBER 12, 2007
Hi everyone,
GREAT NEWS!! WE DID IT!! WE SOLD 96,000 COOKIES!!!
We can't thank everyone enough for all your support with this effort. With your help, we're closer to our goal to raise 3 million for HU3F8. We still have a way to go, but we thank everyone from the bottom of our hearts for stepping up and helping. Check out the site for the details.
Overall, between the Loneliest Road campaign, cookies and other donations, we've raised 1 million dollars!! Sloan is very impressed with our efforts and is moving forward with negotiations with drug companies to get things rolling even though not all the necessary money has been raised. Hopefully, we can keep up the fundraising momentum! Don't forget to keep shopping at www.igive.com/bandofparents. So far supporters have earned $1,400 just by shopping at online stores they would ordinarily shop at and paying the ordinary price. The BoP Shop has sold more than $20,000 worth of merchandise earning more than $7,000 for the Band of Parents. Orders in the next few days can still be delivered in time for Christmas by the regular mail rates.
Other good news........we came home FINALLY last Friday evening after he finished his chemo. The weekend was a whirlwind of going to Boston for our annual trip to see the Nutcracker, putting away the last of the Halloween decorations (though the pumpkins are still on the porch), buying a Christmas tree and at least starting to decorate. And most importantly, finally being all together!! It was sooooo nice to see Matthew and Ryan so enjoying being together again. They really missed eachother.
Now for the bad news. As expected, Ryan's blood counts have been low and he's been receiving transfusions at the Jimmy Fund Clinic this week. Although he's feeling fine, yesterday the dreaded fever came. With no immune system, that bought us an admission to Children's Hospital. Oh, well. Now we hope and pray that nothing grows out of the cultures and there is no real infection to deal with, especially a line infection which would possibly mean pulling the line (i.e. surgery). We also of course want to be sure we're home for Christmas! On the upside, Ryan was thrilled last night because his favorite nurse, Elizabeth, was working and assigned to him. She was his original primary nurse way back when and they just adore each other. There are many other familiar faces too so it's like a reunion of sorts!!
So, after a whole five days under the same roof, we're separated again! *sigh* Hopefully, it will only be a few days.
Once again, thank-you for all your support with our fundraising and for keeping Ryan and all our NB warriors in your prayers.
Love,
Norma and Paul
>
DECEMBER 2, 2007
Hi everyone,
We're still in NY. Ryan finished his radiation treatments this past Wednesday. He did very well with it and suffered no side effects. He was supposed to have started his next round of chemo last Monday, but his blood counts were still too low from the last chemo which was a whole month ago. This seems to be his MO this past year. Sloooooooow blood count recovery. His bone marrow is just very beat up and tired. Once again it's mostly those pokey platelets - often the last thing to recover for anyone - but especially slow in Ryan. Yesterday (Monday) his platelets were 36. That's still below the usual minimum they want to start chemo but since it's already been delayed - now over a month since his last round - they decided to go ahead with it this week anyway. We should finish it up on Friday and finally head home. He will undoubtedly need many red blood and platelet transfusions over the next few weeks so there will be many drives into Boston to the Jimmy Fund Clinic. Obviously, his white cell count will drop again as well which will leave him very susceptible to infection. PLEASE PRAY THAT HE STAYS FEVER-FREE AND INFECTION-FREE so he doesn't end up in the hospital for Christmas. He made it through the last very long stretch of no immune system with no fevers so hopefully he can do it again.
He remains in pretty good spirits. Over the last week or so we've been taking in some of the New York Christmas scene and enjoying some RMH activities. Ryan is working on his letter to Santa. At the top of his list is a Wii. When I told him they cost $500+, he reminded me that Santa doesn't have to pay! Ummm, right, wellllll, hmmm, he may, y'know, run out or something...... I miss the days when a 50 cent bottle of bubble solution was exciting to them.
His next work-up probably won't be until after the first of the year. We'll see what the chemo and radiation has done to the tumor (obliterated it hopefully) at that time and devise a plan from there. Our arsenal is shrinking as he obviously can't have much more chemo. There is an NB vaccine at Sloan that should be available in January. It's been delayed many times so hopefully it will happen this time and Ryan will be a candidate.
FUNDRAISING UPDATE:
First of all, to everyone who has purchased cookies or donated we thank you from the bottom of our hearts!!!!!
The cookie campaign is still ongoing. Volunteers are busy baking and packaging. If you are still planning on ordering but haven't as yet please do so soon. These gourmet cookies make great gifts for teachers, office staff, friends and neighbors or a great addition to your holiday party table. Also, please be aware of the following which I just read on another BoP family's site:
We have become aware of the ugly side of capitalism today when we noticed that another organization registered cookiesforkidscancer.com and put up a bogus web site for their own personal gain and a different organization paid Google to appear ahead of us when you search for "cookies for kids cancer" Jeeeez!!!! We are just trying to save kids.
((Webmaster note. One of my hosts put up an "enhanced default 404 page". It is a scheme that generates pay-per-clicks for and through webportal.information.com and is identical HTML to the one that infected my site(s). It is a scheme that exploits google, also, but they do not care. (A click is a click.)Remember information.com for your .htaccess, hosts files and firewalls.))
Please remember our site is cookiesforkidscancer.ORG and NOT .com. To be extra safe, you can access the link
HERE
or at Band of Parents.
The other day I made my first on-line purchase through iGive.com and can verify that it is quite simple and painless. If you're like me and avoid the malls at all costs at this time of year and do your Christmas shopping on-line, this is the easiest way to benefit BoP at no additional cost to you.
Please visit http://www.iGive.com/BandofParents to register (free) and shop away. I was pleasantly surprised at the variety of stores affiliated with iGive. Those of you traveling for the holidays, there are a few travel related companies on there too as well as toy companies, big name department stores, and just about anything you can think of.
and the BopShop at: www.cafepress.com/bandofparents
Please keep our friend Eden in your prayers (http://www.caringbridge.org/visit/edenbrunskow). She just had to have emergency surgery on her spine to remove disease compressing her spine.
And, Emily (http://www.caringbridge.org/fl/emilyadamson) who relapsed for second time recently and is having a rough time enduring an extremely nasty chemo regimen, along with some other side issues to complicate things.
And Justin (www.caringbridge.org/visit/justincollins) who is here NY for yet another brain MRI and neurosurgery consult to see if what's been showing up on scans is scar tissue, disease or what.
As always, thank you for your prayers for Ryan.
Love,
Norma and Paul
NOVEMBER 22, 2007
Hello and Happy Thanksgiving to all!
We are now relaxing in our room at the Ronald after a lovely Thanksgiving Day. It started early as we all boarded buses at 7a.m. that took everyone at the Ronald to our special viewing area for the Macy's Thanksgiving Day Parade. We had a great vantage point from the 3rd floor of an office building on the corner of 38th and Broadway. We enjoyed a breakfast buffet while we waited for the parade to begin. It was quite a treat to see all those huge balloons go by so close you could almost touch them. After the parade we went back to the Ronald and later in the afternoon a WONDERFUL Thanksgiving dinner was served. I hardly recognized the dining room with all the tablecloths, REAL plates and REAL flatware and opposed to the paper and plastic we're used to. I can't say enough about all the staff and volunteers who took time away from their own families to come and try and make our Thanksgiving special......and succeeded.
Though it was the first time we've spent a Thanksgiving away from our extended family, we are still very thankful indeed. The four of us are together and Ryan is doing well (low blood counts notwithstanding). I am keenly aware of all the families we know who are spending this holiday season without their precious child. 2007 was a year of many, many losses.
Ryan will continue with his twice daily radiation treatments thru the middle of next week. What comes next depends on his blood counts which have been very slow to recover. He is needing platelet transfusions 2-3 times a week, red cells about once a week and is still pretty immune suppressed. He is MUCH happier though now that Matthew and Dad are here......as am I. Today marks one month that we've been in NY!!!
COOKIE UPDATE:
They are ordering the dough on Monday! Since we're talking thousands of dozen cookies, it's necessary to get a feel for how much dough to order and all BoP parents are being asked to send in our best guesstimate on our expected volume before Monday. If you're planning on ordering cookies, doing so before Monday (or letting me know the amount and variety you'll be ordering) would be enormously helpful. Also, keep in mind that orders will be processed as they come in - first in, first out - so the sooner the better. I know some of you may have been taken aback by the shipping costs. Keep in mind that if you order more than one box, shipping just goes up 2.00 an order. In other words...if you order 10 boxes for the office staff, clients, business associates, etc. you only pay 31.00 shipping which is about 3.00 a box!
As mentioned before, a couple of other Band of Parents fundraising enterprises are: iGive for on-line shopping at http://www.iGive.com/BandofParents and the BopShop at: www.cafepress.com/bandofparents.
Thank-you, thank-you, thank-you for supporting this effort!!
Love,
Norma and Paul
Band of Parents
NOVEMBER 10, 2007
Hi all,
It's been a relatively quiet week for Ryan. After sneaking home at the end of last week for a long weekend of sleeping in our own beds, Ryan and I returned to NY on Tuesday. We had his radiation consult on Wednesday. Ryan will have a different type of radiation than he's had in the past, electron radiation. Apparently, it does not penetrate too deep into the body as opposed to other types of radiation. The reason they chose electron is that it allows them to use a higher dose than they would be able to with other types that would be zapping other organs and tissues that don't need it. To those of you who are familiar with radiation oncology, he'll be getting 36 gray as opposed to the 21 gray he's gotten in the past. His tumor sits between his rib and his liver. A small portion of his liver will get some radiation but well over 90% will not and they feel confident he won't have any liver issues because of it. Let's hope!! He starts on Monday and will receive treatment twice a day for 2 1/2 weeks (12 weekdays I believe). Side effects? His skin will most likely have a sun burn like redness, plus it may affect his blood counts a bit since that rib will get hit. His blood counts have already bottomed out from last week's chemo. He received transfusions Wednesday and yesterday and will probably need several more over the next couple weeks. He's supposed to have another round of chemo in a week or two but I'm not sure if his counts will allow that. He's VERY immune suppressed right now so we're in self-imposed quarantine in our room at the RMH. We've already had to pass up a trip to Radio City Music Hall to see a rehearsal of the Rockettes Christmas Spectacular, and a trip to Tavern on the Green with a carriage ride around Central Park. G-r-r-r-r!!
So in case you haven't done the math yet, this will mean we will be spending Thanksgiving in NY. I haven't mentioned that to Ryan yet since he's still upset about missing his class' field trip to Plimoth Plantation yesterday. I'm told that Thanksgiving is actually quite nice here. Paul and Matthew will come down to join us. The RMH goes to the Macy Parade and then a very nice turkey dinner is served here in the dining room. And I don't have to cook anything!!! Always a silver lining.....
FUNDRAISING UPDATE:
The Cookies for Kids Cancer drive is on the launch pad. The web site www.cookiesforkidscancer.org will be up and running on 11/16. Please click here for the official flyer which contains all the information. Please feel free to post and distribute this flyer. Also, anyone reading this who lives in NYC or has family/friends in NYC, WE NEED VOLUNTEERS to help bake and package cookies. We essentially need 10 volunteers at all times during each day and weeknight (20-30 per day depending on the number of shifts) from Dec. 1 through Dec. 9. (EXPERT guidance will be provided.) This work will be done at a professional kitchen in Brooklyn NY that is easily accessible by the #2/3 subway (3 blocks from the Brooklyn Museum). Volunteers should e-mail Shirley Staples Shirley Staples. Indicate the available day (or days!) between December 1 and 9; your available time slot; and your contact info. Shirley will confirm all with you by e-mail or phone. Please indicate if you have culinary experience when e-mailing Shirley. (Please note that due to safety and liability issues, no volunteers under the age of 15.)
iGive.com: Register at http://www.iGive.com/BandofParents and shop on-line at any of over 650 popular stores (such as JC Penney, Home Depot, Barnes and Noble, Best Buy, Lands End, etc., etc.) and up to 26% of each purchase is donated to Band of Parents. Plus, as a first time bonus, they'll donate $5.00 to our cause when you join and shop within 45 days. It's free to register and adds no additional cost to your purchases. So if you like to shop on-line anyway, please consider registering now and tell your family and friends too.
The BoP Shop at www.cafepress.com/bandofparents. There are many great items on this site including beautiful Christmas cards and ornaments, t-shirts, mugs, etc. featuring the BoP logo and/or artwork done by NB kids, all with profits going to Band of Parents
Lastly, please keep Austin Melgar (www.caringbridge.org/visit/austinmelgar) in your prayers. He is not feeling well at all with pain, vomiting and weight loss. His dad, Tom, has worked TIRELESSLY on fundraising getting the iGive, Cafe Press and Christmas ornament ventures off the ground.
Please also keep Emily Adamson (www.caringbridge.org/fl/emilyadamson) in your prayers. I was just talking with her parents the other day in the clinic as they awaited scan results. I read this morning that they learned Emily has relapsed for the third time. It's an extensive relapse that will require her to endure a particularly grueling chemo regimen.
As always, thank-you for your prayers for Ryan. Right now we need prayers that his blood counts recover quickly, that he gets through this without a fever/infection and that his appetite picks up.
Love,
Norma and Paul
NOVEMBER 3, 2007
Hi Everyone,
This is going to be a long one (sorry) but there's lots to tell.
Ryan completed his round of chemo yesterday. It's a low dose combo of drugs he hasn't had since 2004 He tolerated it really well and didn't have any side effects at all!!! He is in good spirits as well. He most likely will have 2 or 3 weeks off and then another round of chemo. In the meantime, we will have a radiation consult this coming Wednesday. We would have liked to have had that sooner but most of the radiation oncology dept. was away this past week at a convention so Wednesday was the earliest we could get. We want to get the radiation started ASAP. We are not really looking at this as a second relapse anymore. The MIBG report from last Friday stated that "in retrospect" the spot can be seen on his February, May and August scans. The reason it wasn't noted as disease was because the spot was in the exact place where the tip of his port line lays during the scan and they (and we) all thought it was the tracer residue on the end of the line. Back then it was too small to really be seen on the CT - until now where you can actually see it pushing in on his liver. We really want to get his radiation going because he has had 4 rounds of high dose chemo since February and this thing still grew. Consequently, I really don't think this low dose stuff he's getting now will do much of anything to eradicate it. His blood counts really can't handle anything higher dose though at this time. The good news is that his bone marrows were all clear!! Yeah!!!
Ryan had a good week with tons of Halloween festivities to keep him busy. We have a bag of candy that probably weighs as much as he does!! On Tuesday I drove home with Matthew so that he could return to school and I could pack a few more things for our unexpected extended stay in NY. I'd only packed for a 3 day trip. I returned to NY on Wednesday and Paul came home (thank-you Auntie Mary for the rides!). Wednesday morning Paul, Ryan and a bunch of other RMDH families got to go down to the CBS Early Show. The kids were all in their costumes and they all got some pretty good camera time. Matthew and I watched from home and saw Ryan on camera a bunch of times. The best part for Ryan was getting to meet one of his favorite music acts, The Naked Brothers Band from Nickelodeon. They were really nice to Ryan, talked with him a bit and gave him an autographed CD which he has been listening to almost constantly ever since. Ryan's Red Sox hat drew a lot of attention too. After the show Harry Smith, Hannah Storm and Dave Pryce all came over to comment, good-naturedly of course. Paul spoke with Harry Smith for several minutes and had a chance to talk up The Band of Parents. He seemed pretty interested. A couple of other parents spoke with Harry Smith too and gave him the business card.
Now I have to tell you something that happened on Thursday. That morning I took Ryan to the clinic and we headed over to where he attends "school", which is merely a table in the waiting area. We were a bit early and his teacher, Rosemarie, came over, sat down next to me and said she had to tell me about something that happened a few days ago. She said "You may think I'm crazy but I have to tell you this." She went on to tell me that she had been reading the story The Legend of Sleepy Hollow to the kids. She got to the part where Icabod Crane asks Katrina to marry him and she says no. One of the kids asked why she said no. Rosemarie said well if you had the choice between a geeky, nerdy looking person or an attractive person, who would you pick? Ryan piped right up and said that it would have to depend of what kind of person they were. Now we're very proud of Ryan for such a great answer but that's not the best part. Rosemarie, with tears in her eyes, went on to say that at that moment, she looked at Ryan and had a vision of his face as the man he would become and that she knew he would be a good man and a good father. She said that nothing like that have ever happened to her before and I could tell she was very deeply affected by it. She also said she hoped she could see him as an adult some day to see if her vision matched his real face. Last weekend I asked God for a sign that He was listening and I got Sue's dreams/visions of his HS graduation and Rosemarie's vision. Way to go on the signs God!!! Sue and Rosemarie, you're both at the top of the guest list for Ryan's HS graduation party and wedding!!!
So, apparently Ryan has a few more souls to save and God has much bigger plans for him than any of us can fathom. We always knew Ryan was special. As we travel this journey with him we are learning just how special.
This past week has been very difficult but we are reminded again how lucky we are. On September 29th, Alec Oughton and the other Loneliest Road riders rode into DC at the end of their cross-county trek to raise money and awareness for NB. One month later on October 29th, the following entry was made on Grace Oughton's Carepage:
We can not believe that, after all the fighting Grace has done over the last two years, we must write what follows.
At 6:23 this morning, October 29th 2007, Grace Lindsay Oughton earned her wings and is at peace in the arms of the Lord. She fought much harder than we could have and we are so very proud of her. She was an inspiration to us and to so many others. She is our princess and our hero.
Fly Butterfly...Fly.
Please keep Alec, Crystal and big brother Landon in your prayers. Two other Loneliest Road riders have seen their children relapse recently. Please pray for Jack Brown and Marissa Monroe.
We never tell Ryan when one of the kids we know passes away. The other night though he inadvertently overheard me tell someone about Grace over the phone. I thought he was engrossed in a movie he was watching and that I was whispering low enough. However, after the call he cornered me and I had to admit to him that it was Grace who had died. He burst into tears and sobbed for quite a while for his little friend asking "Why did she have to die??" How do you answer the unanswerable? We talked about heaven and how wonderful it is. We recounted happy and funny memories of Grace. He stayed curled up in my lap for some time before he finally went to bed.
So, we continue to fight for Ryan and all the other warriors. Your help is so important. Our big holiday fundraiser for Band of Parents is the cookie drive. The web site is being developed but here's something you can use to let you friends, family and business associates know about it before they make their holiday purchases.
Cookies for Kids Cancer
Cookies that taste great and make you feel great
This holiday season be a part of a very special fundraiser that directs nearly 100% of the proceeds of sales of delicious, gourmet
cookies from the newly released cookbook "Cookies" to the Band of Parents organization supporting pediatric cancer research.
Three types of cookies are being offered: Chocolate Chip Oatmeal, Snickerdoodles, and Citrus Shortbread. All cookies will be gift
packaged and ready to be eagerly eaten by friends, family and business associates. Cookies will be sold by the dozen and offered in
a variety of packages to meet anyone's gift needs. Each order will have Band of Parents ribbon wrapped around it and a card enclosed
about our cause, with the website to make donations. The price is $30.00.
The cookie recipes come from Cookies, released in late October by noted cookbook publisher Wiley, written by Sally Sampson who has co-
authored and authored 10 cookbooks. Her publisher is fully supportive of the effort and is offering promotional support and books to sell
with packages of cookies.
Cookies are being baked and packaged by students from the French Culinary Institute who are volunteering their time to participate.
Everyone involved in the project is volunteering their time, talents or services to our cause from the award-winning photographer shooting
images of the cookies to an online advertising firm that is negotiating free advertising space for our campaign.
In addition to cookie sales, the promotion will include an online auction with all packages being donated by celebrity and award-
winning chefs, media outlets (Bon Appetit, Gourmet, Parents Magazine) and other noted personalities. 100% of the proceeds will be donated
to the Band of Parents.
The program will be supported with online advertising and a public relations campaign targeting online outlets like Epicurious.com (the
largest online food website), TV, radio and newspaper organizations. Both Google and Ebay have expressed interest in supporting the
campaign to ensure its success and Epicurious is tentatively including our cookies in their holiday gift guide which is out on
November 16th.
Orders are being accepted until December 14th and can be taken either via order forms being developed for Band of Parents members, or
online at a website being created for this project by an award-winning website development company. Credit card transactions will be
accepted.
What we need to make this project a success is YOU. We need you to tell everyone you know about this project to secure orders. We need
you to encourage everyone you know to tell everyone they know about this unique fundraiser that is one that not only tastes good but
makes you feel good. Our goal is to sell 7,000 dozen cookies. We need everyone to spread the word starting today! How big is your network?
Let's make this holiday a time of hope and a time of "banding together" to successfully bring this treatment to Memorial Sloan
Kettering!
We ask that you start to create the cookie buzz today so that people don't take care of their holiday list before they know they can give
a gift that will keep on giving!!
Thank-you for your continued prayers for Ryan and all our NB buddies.
Love,
Norma and Paul
Band of Parents
OCTOBER 28th, 2007
It's 1:30 a.m. Sunday night, or should I say Monday morning. A little over and hour ago we watched the Red Sox win the World Series. Just like we did in 2004. And just like 2004, we are still battling neuroblastoma. We woke Ryan for the last out. With bleary eyes, he said "Okay, good. I'm tired." and went right back to sleep. We were expecting a bit more excitement but he was indeed very tired.
Baseball and Halloween parties have been bright spots in an otherwise rotten weekend in our corner of the world. Saturday was a party at Bloomingdales which was a lot of fun. Thank-you Barbara for getting us on the list at the last minute. The kids enjoyed cookies, cupcakes, goodie bags and trick or treating through the cosmetic and perfume departments. By the end our bag weighed more than Ryan I think. Matthew is here now (thank-you Uncle Michael for driving him down) and he joined us for another party Sunday at a Mexican restaurant which was very nice. I expect the clinic will be in full Halloween mode this week as well.
Ryan's spirits have been pretty good. He's been having fun with Matthew and other kids at the RM House. Already gotten some decent mileage out of his costume. He hasn't even mentioned "it" again. We'll see what happens tomorrow at the clinic.
As for Paul and I, we're still a wreck, still angry, still scared bleepless but still ready to fight for our precious boy. We've gotten many lovely e-mails offering love and support which we deeply appreciate. Many refer to my question in the last update of what do we pray for and why. Thank you to everyone who offered their thoughts and feelings on the subject and reminded me that He has not forgotten us. Saturday and Sunday I simply asked God to just give me a sign that He is indeed listening to our prayers. Now maybe I'm simply grasping at straws here but I want to share part of an e-mail we got today from my dear friend Sue: ...... For the past two nights I've had the same dream/vision, so clearly I've woken up both nights thinking this is so much more than a dream - It's of Ryan at his HS graduation party - he is a slim, sandy haired, charmer working his crowd of admirers and he comes to me and smiles an ear to ear smile and says "see, it was all worth it" and hands me a slice of pizza. As I said, maybe I'm grasping at straws, but I'm taking that as my sign. High School graduation - dare we dream!?!?!?
Now I'm going to plagiarize another site. Nick Franca's mom Caryn has taken on the enormous task for coordinating fundraising for the
Band of Parents.
Here's a preview of some exciting holiday stuff she posted today. More details will come later.
The holiday season is fast approaching. Whether you celebrate Christmas, Hannakuh or another form of winter holiday our BANDOFPARENTS is ready to help you make shopping meaningful and easy!!! It is too amazing to explain fully but...one of the families who has neuroblastoma in NY is very connected in the food publishing world. An amazing team of celebrity chefs and many in the food magazine world have put together cookiesforkidscancer!!!!! A website for ordering is going up this week. A friend of Gretchens (the mom whose son has NB) just published a cookie cookbook and is on a book tour. The recipes come from her book, her royalties from tour go to Band of Parents, the ingredients are donated, the bakers are the top chefs in the industry and the packing shipping and delivery to your friends family, clients, coworkers will be in the first weeks of December!!! Band of Parents ribbon will be wrapped around the boxes and a card will be inside explaining our cause and that the gift was a charitable one with all money going to Band Of Parents!!!! OUR PROJECTIONS are $300,000.00 IF it takes off like we anticipate because of our networks of friends who know friends who know friends. There will be an official announcement by the end of the week I hope with all the details and how to order. Imagine clicking on a beautiful holiday cookie package, baked by professional chefs and shipped to your gift list... and you contributed big time to our cause!!!! There is a major cooking website that will also hopefully "banner" our product on their homepage for the holiday and there may be celebrity cookie auctions on ebay as well. I am sure the media will be covering this as it is unheard of to have this massive of a "business" be built and executed in a month, with all volunteers!!!! People are so generous when they believe they can really help. Gretchen's network has totally rallied and built this dream opportunity for BandOfParents and we will definetely be using this as our major holiday fundraiser!
Please start thinking of gifts you need to send, or a party you may be throwing that you may need the "party platter" order and tell all of your email lists and all of your friends and family. The ordering website will be up soon, I just want to get your attention before all of the other "online" catalogs get to you!!! This gift will 100% drive hU3f8 closer in a big way!!!
Also, the BopShop is up and running as well with lots of Band of Parents merchandise from t-shirts, sweatshirts, mugs, tote bags etc. Check it out at www.cafepress.com/bandofparents All profits got to Band of Parents fund.
Needless to say, we feel a very real urgency to move this research at Sloan Kettering forward as quickly as possible. New treatments are what we need for Ryan and so many others. Our arsenal gets smaller and smaller all the time as he becomes resistant to or doesn't respond to treatment.
Thank-you for your prayers for Ryan, his very weary parents and all our NB warriors.
Love,
Norma and Paul
OCTOBER 25th, 2007
Hi Everyone,
Once again, we go for "routine" scans. Once again, all packed up and ready to head home. Once again, the monster rears up - Ryan has relapsed.
There is a soft tissue mass behind his 9th rib on the right side. We saw it on his MIBG scan but dismissed it because it was in the exact spot where the end of his line lays. Many times in the past it has lit up only to be caused by the MIBG solution not being flushed thru his line well enough so it lights up at the tip. It was merely a coincidence that the actual mass was in the exact same spot where the tip of the line was lying. The CT scan confirmed that it is indeed a mass. We waited about 5 hours to speak with Dr. Kushner today, never expecting this news. We thought we were just going to be told what treatment was coming next and when.
The preliminary plan is to start low dose chemo on Monday. We will probably have a radiation consult at some point during the week, possibly a PET scan, possibly a surgical consult, although no surgery (if deemed necessary) would happen until after they've hit it with chemo.
It was a very long and quiet 5 block walk back to the Ronald. Paul and I each trying to wrap our brains around this and process everything. We knew Ryan was fully expecting to grab our bags and hit the road so as soon as we got back we had to tell him there was another spot. He immediately burst into tears crying "again!?!?" We held him and reassured him as much as we could. He hates the idea of more chemo but this should be low dose and hopefully easier to tolerate. He calmed down a bit but then started crying again when he realized we wouldn't be home for Halloween. Fortunately, we brought his costume with us and there are plenty of Halloween festivities here at the Ronald and at the clinic. Matthew will be joining us for a couple of days too so I'm sure that will boost his spirits.
We are still awaiting results of the his bone marrows. Dr. Kushner feels it is unlikely that there will be disease there. It most likely would have shown up on the MIBG plus his marrow has been clear since 2004, though you can never be sure. His LDH, another marker, was normal. His brain and spine MRIs were clear. Urine markers are still pending as well.
Now is the point where I would usually ask for prayers. To say my faith in prayer is rattled is an understatement. I and countless others have prayed for many kids to be healed, only to watch them die. I've accepted that some would die and only prayed for a peaceful and pain free passing, only to witness an innocent child suffer an agonizing end. Someone explain it to me. What do I pray for and why?
We'll update again when we know more.
Love,
Norma and Paul
OCTOBER 10th, 2007
Hi everyone,
Ryan is DONE with intrathecal 3f8 treatments!! Last week was his 4th and last treatment. It went a tiny bit better than the last one - only 12 1/2 hours of vomiting as opposed to 15! Soooo glad that's behind us.
On to the next treatment. We return to NY Oct. 23rd for a full work-up in preparation for returning to systemic 3f8 treatments IF he is still HAMA negative. Please pray that he is. When I told him that 3f8 was probably what was coming next, he said "good". I asked "why is that good"? He replied, "it's better than chemo." If he has HAMA'd, it would mean more chemo. UGH!
Ryan's blood counts FINALLY were high enough to get his dental work done. Yesterday instead of returning to school, he spent two hours in the dentist's chair having 3 teeth pulled, 3 more filled and some sealants put on. He did get breaks here and there though. He breezed through it in his usual Amazing Super Ryan fashion which is why the dentist decided to go ahead and do everything yesterday so he doesn't have to go back again. They were astonished at how well he did. His Fan Club grows!!
Matthew and Ryan are both back taking karate lessons. Ryan had to stop last February when he relapsed and Matthew stopped in May when we couldn't juggle everything anymore. We're hoping this will help Ryan build up his strength and agility. He's a bit behind in those areas.
The Loneliest Road ride is over. These incredible dads rolled into DC on 9/29 to the cheers of a couple hundred NB families and supporters. Dr. Kushner, one of the NB docs at Sloan rode the last 10 miles with them. He also spoke at a Capital Hill press conference a few days earlier. His (and all the NB docs) dedication to our kids is unbelievable. Several NB parents also met with their Representatives in Congress to garner support for the Conquer Childhood Cancer Act. The driving force behind this bill is Congresswoman Deb Pryce who lost her own daughter to neuroblastoma. Once again, a huge and heartfelt "thank-you" to those of you who have donated to the Loneliest Road Campaign. Donations are still being accepted as we have a LONG way to go to meet our goal. Last I heard we were at about $250,000 in donations but we need at least 3 million.
The Band of Parents web-site is up and running. "BOP" is our group of NB parents who are working to further research and drug development for NB. Though some areas of the site are still under construction, it is pretty impressive and well worth checking out at http://www.bandofparents.org/ .
Thank-you for your continued prayers for Ryan. Please keep him all our NB warriors in your prayers. I've listed their names and web-sites in past updates. Many of you have told me that you don't visit the sites because it's too depressing. Well, if you think reading about it is hard, imagine living it. Ryan is close to completing his 4th year in treatment - without a break. We've seen far too many tiny yet courageous friends become angels in that time. I'm sure there's an element of "cancer fatigue" out there and maybe you're getting tired of hearing about it. Understandable. We're getting pretty tired of it too BELIEVE ME. Almost four years ago we entered a world we only vaguely knew existed in the periphery of our minds. Now, we scarcely remember life Before Cancer.
Thank-you for traveling this difficult journey with us.
With Hope......
Norma and Paul
SEPTEMBER 24th, 2007
Hi everyone,
Round 3 of intrathecal 3F8 is complete!! We were admitted this past Tuesday but started the day in clinic with bone marrow biopsies. This was a "redo" of the ones he'd just had in August. Some of you are aware of our latest scare. A call from his doc. in NY a few days before we left saying those August bone marrows had one slide with a "questionable clump of cells". A phrase that quickly strikes fear into the heart of any NB parent. After 8 anxiety-filled days, we got word Friday night that the new tests were all clear. HUGE sigh of relief. Bone marrows were the one thing we had become complacent about. He hadn't had marrow disease since mid-2004. Now it'll just ratchet up the angst of scan week a few more notches in the future.
Back to his treatment. He need both platelets and red blood cells first but then he had his IT3F8 injection on Wednesday afternoon. I wish I could say it was a breeze, but Ryan got pretty sick with it. Just like the 1st round, he vomited for 15 hours, had enough pain to warrant some dilaudid and developed a fever. During all this we also had to deal with a screaming roommate which added to the stress. This poor kid (the roommate that is) is just 4 years old and a brand new NB diagnosis. One round of chemo under his belt and so thoroughly petrified of anyone and everyone who comes near him that all he can do is scream. Who can blame him for shrieking "you're not touching me" over and over again. Contrast that with how compliant and cooperative Ryan (also diagnosed at 4 yrs old) has been since Day One and it just illustrates how he truly IS The Amazing Super Ryan. Looking at this other kid's mom, I wondered if that's how I looked when Ryan was first diagnosed - sort of a cross between a deer in headlights and the terrified victim in a horror movie. Anyway, in the selfish pursuit of our own sanity, we asked for our room to be changed. Due to the lack of extra beds, we had to wait until Thursday - and then we were released Thursday at dinnertime. Oh, well.
By that time Ryan felt 100% better and we made it back to the Ronald McDonald House JUST in time for their annual butterfly tagging event. This is the 3rd year in a row that we've coincidentally been there for butterfly tagging. A fact that is both a little bit cool and a little bit sad. Anyway, at this event the kids get to place a little numbered sticky tag on a monarch butterfly's wing and then release it. They migrate to Mexico where supposedly folks down there record the number if they find it and thereby track the migration.
Next, we return to NY Oct. 1st for Ryan's final round of IT3F8. If he is still HAMA negative, we will begin systemic 3F8 3 weeks after that. Somewhere in between all of this we'll try to get his teeth taken care of finally. His counts have not been cooperating but hopefully we can get this done SOON since the teeth are bothering him again. We've decided to get it done locally instead of doing the whole general anesthesia, root canals thing at Sloan that I'd mentioned before. He'll lose 2-3 teeth but they're baby teeth and they put "space savers" in so his 2nd teeth will have room to come in. Please pray that THAT goes well!
The Loneliestroad cyclists are entering their final week of their cross-country trek. There's been some great media coverage along the way which hopefully has generated donations. It's hard to put into words how much we admire these dads who have chosen to do whatever it takes to make this humanized 3F8 a reality. They've left their own kids who are in active treatment to do this. They do it not just for their kids but for all our kids and we are so very grateful. Those of us who can't cycle to the end of the street without getting winded are left to spread the word in support of this effort. If you haven't already, please visit www.loneliestroad.org and check out the daily blog from the guys, view newscast pieces done along the way and, of course, donate!! Just because the bike ride ends this coming weekend doesn't mean that donations have to stop. Donations will still be accepted well past the end of the bike ride. Last I heard we'd passed the $200,000 mark but we need 2-3 million!! Anyone reading this who lives in the DC area, please consider coming out to cheer on the riders on Saturday, Sept. 29th. A welcome rally is being planned to take place at Arlington Gateway Park in Rosslyn VA at the foot of the Key Bridge just across the Potomac River from Washington DC. http://www.arlingtonva.us/departments/ParksRecreation/scripts/parks/parks_details.asp?ParkName=Gateway%20Park Arlington County has the park blocked out for Loneliest Road starting after 8am on Saturday Sept. 29, 2007. Several of the NB families we know who live in the area will be there and we'd love to be there ourselves but the cost and logistics are too difficult. We're hoping for a good turn-out.
Prayer requests:
Once again we must ask for prayers of comfort and peace for the parents of a child lost to this disease. James Runde passed away on September 19th at home with his mom and dad by his side. In these last weeks we've been awestruck at their unwavering faith and incredible strength. James was their only child. www.caringbridge.org/visit/jamesrunde
Eden Brunskow www.caringbridge.org/visit/edenbrunskow Eden is traveling to Vermont this week to participate in a Phase I trial in hopes of beating back the beast once again. She and Ryan are buddies and we spent some time with them this past week. They did butterfly tagging together AGAIN.
Austin Melgar www.caringbridge.org/visit/austinmelgar whose disease has progressed despite treatment.
Grace Oughton http://www.savegrace.com Grace has been in the hospital for A LONG TIME. She misses her daddy who is a loneliestroad rider.
Max Palmer www.carepages.com and type "gomax" Max is being treated in Boston, had his double transplant over the summer and is now I think 3weeks into a very scary ICU stay due to respiratory complications. Please pray he turns the corner soon.
Philip http://web.mac.com/polarbearo/Site/Welcome.html who is battling back from another relapse of Embryonal Rhabdomyosarcoma. He had surgery recently that was very difficult and complex. We were thrilled to see him back at the Ronald the other day. On the mend but a long way to go.
Harrison Nichols http://www.caringbridge.org/nc/harrison Harrison has had disease progression recently and is in great need of prayers.
As always, thank-you for your prayers for Ryan.
Love,
Norma and Paul
SEPTEMBER 10th, 2007
Hi everyone,
Ryan is doing great. He's enjoying school, loves his teacher and has a couple of his buddies in his class.
We made a trip into the Jimmy Fund Clinic just before the long Labor Day weekend to tank up on platelets and red blood cells. If you HAD to go to the clinic, it was a good day to go. We were once again very fortunate to be offered tickets - this time to the Patriots last pre-season game. It was the first time Paul or the boys had been to a Pats game and they thoroughly enjoyed themselves - and the Pats won!
We'll be heading back in today for more platelets. Hopefully, this will be the last time he'll need a transfusion as we're done with chemo, at least for the time being. Next week we head back to NY for his next to last intrathecal 3F8 treatment. He'll have one more treatment in October and then we're not entirely sure what will come next. If he's still HAMA negative he can go back to the regular systemic 3F8 that he had been getting before relapse. Otherwise, it'll be more low dose Temedor (I think).
Today's The Day! The Loneliestroad bike trek across the country begins today in CA. Many, many thanks to those of you have already donated to this campaign. If you're interested in keeping up with their progress, they are GPS equipped. Just log in to www.loneliestroad.org and follow the simple instructions. Also on the site is a link to Sydlets. Sydlets are bracelets, necklaces, and ear rings made by NB Warrior (and daughter of a loneliestroad rider) Sydney Sims and her mom. They are made with Swarovski crystal beads complimented with a sterling silver awareness ribbon, so they can be worn proudly, and spread the word on pediatric cancer, and the brave warrior children, like Sydney and Ryan, who fight everyday for their lives. 70% of the proceeds will go to loneliestroad.
In the spirit of Pediatric Cancer Awareness Month, there's a couple of links I'd like to share. http://www.onetruemedia.com/my_shared?z=1ed02fa991c83413dd98d3&utm_source=otm&utm_medium=text_url is a video montage of NB warrior Ila Jean put together by her mom who I met on our last trip to NY. Very well done. The other is about kids who are not NB kids but is also very well done. At the end it urges donations to CureSearch but obviously, our focus right now is on loneliestroad. It's at http://www.crazycancermom.com/ .
In my July update I mentioned a girl named Lillie who had just relapsed. Her brain relapse was discovered on July 9th and she passed away August 28th. She had only been diagnosed last October. Her mom wrote the following in her web site this weekend in reference to the above video and the loneliestroad campaign:
"In the YouTube video you will see treatments and procedures Lillie went through and many more not shown. As you can see, these kids could be yours. It is true, one day they are healthy, the next they are “cancer kids”. This is a world none of us thought we would ever be in. Just like Lillie, these kids should be out playing, enjoying the summer instead of procedures, needles chemo, scans, etc. So, I beg you PLEASE write the congress men and women on the committee to vote for the conquer Childhood Cancer Act of 2007.
On another front, the dads of “the loneliest road” bike ride across America begin their mission Monday. .......So, read about it on the website but in short this treatment could have helped Lillie tremendously. Basically it is a humanized version of 3f8. Lillie’s bone marrow was still diseased after 7 rounds of intensive chemotherapy. Only after the FIRST round of 3f8 (the mouse antibody for neuroblastoma only available at Sloan Kettering) was she considered NED (no evidence of disease). This treatment is promising and gave us two wonderful and healthy months with Lillie. However, Lillie developed HAMA (this is where her body built up an immunity/resistance to the therapy) after the third round and could no longer receive the treatment. After being off treatment for only five weeks the NB beast came back with a vengeance. As you recall, Lillie developed brain tumors, one ruptured and the disease came back in her bone marrow. Four months after being considered NED, our Lillie was gone. The human antibody reduces the problem with developing HAMA to treatment. This new treatment would not likely provided a cure for Lillie but she would most likely still be with us and enjoying the pool, going to school, fighting with her sister, hugging her mommy and daddy, etc. So, I ask you to please make a tax deductible donation in Lillie’s honor ($5, $10, $20 any amount will make a difference). Many of you have asked what you can do to help, this is it, please honor Lillie by helping save another child from dying a horrible Neuroblastoma death. Please go to www.loneliestroad.org Follow the links to The Loneliest Road to make your donation.
THE BEAST MUST BE DEFEATED, WE NEED A CURE!!"
While the last 3 1/2+ years have been anything but easy for Ryan and our family, the above illustrates how blessed we are to have had this time with Ryan, to enjoy his hugs, kisses, smiles, laughter and sweet spirit. We try to remember that, within our misfortune, we are indeed very lucky and very blessed.
Prayer requests:
Eden Brusnkow http://www.caringbridge.org/visit/edenbrunskow. A sweet little girl who is having leg pain due to disease and will start radiation this week.
Max Palmer www.carepages.com and type "gomax". Max is being treated in Boston, had his double transplant over the summer and is now 2 weeks into a very scary ICU stay due to respiratory complications.
James Runde http://www.caringbridge.org/visit/jamesrunde. James is on hospice now. Please pray they can manage his pain and that he will have a peaceful journey "home".
Nick Franca http://www.caringbridge.org/visit/jamesrunde. Nick is suffering NASTY side effects to chemo plus an intestinal infection.
Philip http://web.mac.com/polarbearo/Site/Welcome.html who is battling back from another relapse of Embryonal Rhabdomyosarcoma. He had surgery last week that was VERY difficult and complex.
Grace Oughton www.savegrace.com. Grace is also dealing with chemo side effects and other issues. Her dad, Alec, is a loneliestroad rider.
Please pray for safe travel for our loneliestroad riders.
And, of course, Ryan. Please pray that his blood counts recover nicely and that his treatment next week goes well with little or no side effects.
Thank-you.
Love,
Norma and Paul
AUGUST 19th, 2007
Hi all,
Here's our e-mail from Dr. Kramer regarding Ryan's scans:
Hi Reardons! Both MRIs (brain and spine) and MIBG are all clear. Great news for a great boy! All the best ahead for Ryan.
WOOO-HOOOO!!!! Okay, so the bone marrows are still pending but they've been clear since 2004 so we're not particularly worried there. We can breathe for another 3 months!
All 4 of us have been here in NY since Tuesday evening. Yesterday (Sat.) the Ronald McDonald House took families on a terrific trip to Dorney Park in Allentown, PA. It's an amusement park/water park. Though we didn't go to the water park, we all had a great time on the amusement rides. It was a perfect, gorgeous, sunny day. A couple of the more bumpy rides bothered Ryan's bone marrow sites (he'd just had them done on Friday) but other than that a great time was had by all.
Paul drove home today. Matthew, Ryan and I will remain for this coming week for Ryan's chemo. Hopefully, it will go as smoothly as the last round! Pray, pray, pray!!!!
So that's all the good news. The bad news - and in the grand scheme of things it's not all that bad - Ryan's teeth have been so weakened by the massive amounts of chemo he's gotten that his teeth have extensive decay. Because of his relapse we had missed his 6 mo. check-up in Feb. This summer he started complaining of pain so I took him to the dentist. Two of his teeth were so bad the nerve was exposed. Between dentists' vacations, our trips to NY, our vacation, dropping blood counts due to chemo, etc. we haven't been able to get this taken care of except for a couple of temporary fillings to keep him comfortable. In desperation I contacted Sloan and asked if they had a dental dept. Turns out they do so Ryan was seen the other day. He has at least 8 teeth that need work, at least 3 t hat will need either root canal or extraction (fortunately all baby teeth), plus ordinary fillings. What they're proposing is to do everything all at once in the OR under anesthesia. Once again, the planets have to align with dentist/OR schedules, chemo, blood counts, etc. Like the kid hasn't been thru enough, he has to endure this crap too! G-r-r-r-r-r! Please pray that these procedures will not cause him too much discomfort. He's so stoic about it. The way he accepts what is thrown at him is amazing.
In the more than 3 1/2 years that Ryan has been in treatment, we've from time to time asked for donations for NB research. We had a hugely successful charity auction in 2004 which raised $30,000 for Dana Farber's NB research. This year, ForRyan.org donations reached $5,000 and that money went to NB research at Boston Children's Hospital. We can never fully express our gratitude for your generosity.
But there are still miles to go - literally. September is Pediatric Cancer Awareness Month. On September 10th 5 NB dads will begin a bicycle relay in Sacramento, CA and end on Sept. 28th in Washington, DC. The purpose is to spread awareness, while soliciting the money required, to fund the project to humanize 3F8 antibodies. I strongly encourage (okay, beg) you to visit their web site http://www.graceoughtoncancerfoundation.org/loneliestroad/index.html to learn more about this event and it's purpose. It's a great web site with a lot of info to help you understand what this is all about, meet the dads, and make a difference in the lives of countless children, possibly Ryan. If for any reason you are not comf ortable donating there, donations to ForRyan.org are being accepted solely for this project as well.
Approximately 60 NB families from around the world have come together to form the Band of Parents whose purpose is to move this project forward as quickly as possible thru fundraising and spreading the word. Ordinary people, extraordinary circumstances. All have witnessed and endured more heartache than anyone deserves. Please help us to continue to raise awareness of this effort by forwarding the loneliestroad.org web site information to you family and friends. We'd like to do some sort of local fundraising event in our area too so if anyone has a great idea you'd like to share, we're all ears.
Thank-you!!!!
Love,
Norma and Paul
Hi everyone,
Well we're finally back home after being away for 2 weeks! One week in NY for Ryan's chemo and today marked the end of our wonderful week on Cape Cod. We ended our vacation exactly as we did last year. Cheering on friends and strangers alike who are biking the Pan Mass Challenge, a 192 mile bike event across Massachusetts that raises millions for Dana Farber Cancer Institute. Our own Neuroblastoma team was out in full force with the money they raise going directly to NB research at DFCI. The new twist this year was that Ryan was Pedal Partner for one of the other teams riding (NB team already had their Pedal Partner). We got to meet several of the terrific members of Team Eradicate who are using Ryan as their inspiration this year. Their team has had two other Pedal Partners in past years and they are both doing great. We certainly hope Ryan will keep that tradition going!!! Many thanks to Team Eradicate for their dedication. This is a screaming hot,humid weekend which makes the ride all the more grueling. Hats off to all the riders and a heartfelt thank-you! On a side note, New England Cable News does extensive coverage of the PMC and both Ryan and Matthew have been shown in their reports today so if any of you locals want to catch a glimpse of the boys (just pics, no interview), tune in to NECN. They also interviewed me but I guess I ended up on the cutting room floor!! One other interesting thing was just as we arrived at the rest stop and met with one member of the Team, we were standing talking and this women came over and started talking to Ryan and me. She introduced herself just as Uta and chatted for a bit. As she was walking away I thought she looked awfully familiar and then it dawned on me that she is past Boston Marathon winner - and I think Olympic marathoner - Uta Pippig!
It's seems been our summer to meet famous people and see Red Sox games guess. Earlier in July Paul's cousin Joanne very kindly gave us tickets to a Red Sox game (many, many thanks!). Just for giggles I called the Child Life person at the Jimmy Fund Clinic to see if the Red Sox ever do anything for a Jimmy Fund Kid before a game since they're the official charity of the Red Sox. I was told they generally don't simply because their are too many kids BUT since it was a Tuesday game Ryan could be a part of The Wakefield Warriors program, which Red Sox pitcher Tim Wakefield created in 1998. It allows pediatric patients to watch batting practice and visit with Tim before Tuesday home games. What great timing! Both Matthew and Ryan received a gift bag with T-shirts, baseballs and gifts. Oh, man. To walk onto the field at Fenway. Wow. That alone is a thrill. We watched batting practice and the boys were able to get autographs from Mike Lowell, Mirabelli, Kevin Youkilis, and the VERY elusive autograph of Manny Ramirez. We also spotted Red Sox legend Johnny Pesky in the stands and went over and got his autograph too. Of course the boys had no idea who this old guy was but for Paul and I it was a treat to meet him. As if all that wasn't good enough, we were then taken to the Red Sox Club House where we met Tim Wakefield. What a nice guy! He signed baseballs, hats, whatever else the boys had to sign. He even showed them how he throws his knuckle ball. We got a couple of great pictures and then it was off to our seats for the game. We had no sooner sat down when Ryan declared "This is one of the best days of my life!" Ya gotta love it!
Now for the NY part. I think I can safely say all your prayers worked because Ryan's chemo was the most uneventful since his relapse. He sailed through the week with no nausea or diarrhea. He felt well enough to get together and play with some buddies we hadn't seen in many months. The 8th floor at the Ronald was like a college dorm party for the pint size crowd all week with all these boys running around and having a blast until waaaaay past their bedtimes. It was also nice for me to reconnect with their moms too. Jeremy and Justin were there for scans and I'm happy to say they both are got the all clear.
At the end of the week, Paul and Matthew drove down to pick us up and we headed straight to the Cape. It was a great week weather-wise and we enjoyed the pool, mini golf, the beach of course, a Cape Cod Baseball league game and a spectacular whale watch. Matthew sampled clam chowder from several restaurants and declared The Beachcomber's in Wellfleet to be the best in the galaxy! Ryan had a couple of minor bouts of nausea and diarrhea but not enough to slow him down. His appetite has fallen off again so we may start him back on his appetite stimulant. The week flew by too fast. While we did have a good time, Paul and I never truly relaxed as we did last year. Then, we were coming up on the one year anniversary of Ryan showing No Evidence of Disease and within hours of arriving at the Cape, we were soooo relaxed. This year, we are in a very different place and the relaxation never really came. Having just come from chemo, plus scans and more chemo looming in August and the inescapable knowledge that Ryan is NOT in the lucky group who never relapse gnaw away at us constantly. Relapse is in the back of every NB parent's mind but once it has happened, that black cloud and the paranoia that goes with it just never goes away. Take for example the weekend before we left for NY. Ryan is getting out of the shower and asks me why he has this OTHER lump (besides his Ommaya reservoir) on his head. I look and sure enough there's a nickel size lump there, right where he had had a boney lesion back at his original diagnosis. To an ordinary parent, it's a bump. To an NB parent, it's cause for near hysteria. The docs in NY certainly didn't dismiss it. They kept an eye on it but by the end of the week it was gone. Bullet dodged. Every lump, bump, ache or pain will always send us into a panic. No matter how well Ryan is doing, the fear is always there and will NEVER go away. I liken NB to the murderous monster in a horror movie who, no matter how many times you think you've killed it, it always rears up again.
Hope is what keeps us going. Hope for new treatments that will indeed kill the monster once and for all. In previous updates I've made mention of the humanized 3F8 project. Many of you have asked about where to send donations for the HU3f8 project. I have to say there are some really important issues that need to be handled before "official" targeted fundraising can happen. In the meantime.... a wonderful neuroblastoma family from Virginia, the Oughtons have a foundation for their beautiful little girl Grace. He is a firefighter for Spotsylvania County. The firefighters set up the foundation when Grace was diagnosed at 18 months. She relapsed several months ago and found Sloan Kettering for her relapse therapy. They know what a sense of urgency stirs within when the word relapse is spoken. So...Alec (dad) and another neuroblastoma dad (Kevin Sims) have decided to do a bike marathon from California to the steps of DC, along with several other dads!!!!
They are going to raise money for Neuroblastoma research. It is going in Grace Oughton's foundation account. Alec (the dad) is so passionate about raising funds that he will leave his family to do the bike marathon to raise funds. He has promised that he will hold them in her foundation account until all the wrinkles are ironed out of the official Humanized antibody fundraising project. So this in no way is to be spun as a HU3f8 Sloan Kettering project, we have hoops to jump through first for that. BUT... if anyone of my wonderful readers wants to donate to the bike marathon, rest assured I know the money will eventually land in the account that will drive the project forward in the future. Please visit: www.loneliestroad.org. There is great info there on 3F8 and how this humanized 3F8 will improve the odds for sooo many children. Donations can be made there. Even a small $25.00 donation will help. In their first day going online they raised over 2500.00. It is a foundation, so it is tax deductible! Alternatively, you can also donate at ForRyan.org and those funds will be held for this project. The gift shop has some great jewelry for sale (not tax deductible) or just a straight donation can be made.
Lastly, and as per usual, I'll end with prayer requests.
A little boy named Owen who we'd heard of but never met until this trip has relapsed again. Owen had had a brain relapse some time ago and was one of the 10 perfect record kids I've mentioned before. Now he is the first of this group of brain relapse kids to re-relapse. Please pray that the spot on his knee will be cleared up soon.
Nick Franca (www.caringbridge.org/visit/francafamily) is recovering slowly from surgery to correct a bowel obstruction. Please pray for his recovery both physically as it is delaying his next round of chemo and emotionally as he is in very poor spirits.
Austin Melgar (www.caringbridge.org/visit/austinmelgar) whose disease has progressed despite treatment.
Nathan Gentry (www.caringbridge.org/co/nathanmichael) earned his angel wings recently. Please pray for comfort and strength for his family.
Jim St. Pierre (www.caringbridge.org/visit/jimstpierre) . Jim is the husband and father with brain cancer that I mentioned in a recent update. Upon returning from vacation I was saddened to see that Jim had passed away earlier this week. Please keep his wife Carol and their two sons in your prayers as well.
Grace Oughton http://www.savegrace.com also is recovering from bowel obstruction surgery.
James Runde http://www.babiesonline.com/babies/o/our_boy/ whose disease has progressed. Please pray that his pain subsides. His parents have difficult decisions in the days ahead. Please pray for guidance for them and the doctors.
And of course for Ryan. He will have scans August 15-17th and then start another round of chemo the following week.
Thank-you!!
Love,
Norma and Paul
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