A knight to Remember Charity Event in Ricky's honor

We have planned a event to help the Magical Moon Foundation as well as honor Ricky.

It's being held February 20th, at the Shaw's Center, just one mile off Route 24 in Brockton. Ricky's brother Michael Shaponick and many other nationally ranked youth ballroom dancers are preforming, and music will be provided by Deirdre's brother, Conor O'Brien and friends. Ticket price of $75 is fully deductible and includes an excellent dinner, dancing and a silent auction. Tables of 10 can be had for $700, so get your friends together and make a night out of it.

Don't you want something to do in the dead of winter? Come make a difference and have a great night out all for an excellent cause.

I hope to see you there! You can buy tickets (advance sales only) by clicking here:

http://www.themagicalmoonfoundation.org/Knighttoremember/

Thank you for all the amazing support we have received.

Merry Christmas and happy holidays!

Bill

Ricky and the Magical Moon Farm in the Globe today!

An amazing article by Bella English, the paper version has pictures, including one of Ricky and I from last month while at the farm.

http://www.boston.com/lifestyle/family/articles/2009/11/28/at_magical_moon_farm_kids_with_cancer_are_transformed_but_financial_woes_loom/

http://www.boston.com/news/health/articles/2009/11/28/at_magical_moon_farm_kids_with_cancer_are_transformed_but_financial_woes_loom/

Wonderful service, wonderful friends and family

Thank you to all for the amazing amount of support!

I'll be posting more as I can, but I wanted to let people know that we are planning a big fundraiser in Ricky's honor February 20th in Brockton. More details to follow.

Local hotel

Several people have asked, so we have a block of rooms right in the harbor at "The Inn at Scituate Harbor", for a special rate of $89.00, just mention the funeral. Their contact info is 781 545 5550, or info@Innatscituate.com

Regards,
Bill

Details of services

I first need to thank you all so much for the tremendous support that we've received over the last several weeks, and especially since Ricky's passing. It means so much to us.

I'll write more later, but I did want to share with you that Ricky had a amazing week with the last night lasting well past 10 PM with lots of visitors with lots of hugs and laughter. I slept next to him that night, me in a folding bed, and he in his hospital bed with the rail removed. I was able to hold him all night, and when he passed away the next morning, he was being held by Pat, Deirdre and myself. He slept very sound that night as he was in no discomfort or pain, and when he left us, he showed a sense of peace. It was a gentle passing.

His arrangements are below, also in the Patriot Ledger weekend edition and Sunday's Globe.

Thank you so much once again from all of us.

Bill


Richard William Hoffman
Richard William Hoffman Richard William Hoffman SCITUATE Richard "Ricky" William Hoffman of Scituate, passed away peacefully at home on Friday November 6, 2009, at the age of 11, after a brave and hard fought 2 year battle with brain cancer. Ricky is survived by his beloved parents Patricia (Cahill) Hoffman, William Hoffman and his wife Deirdre of all of Scituate, brother Michael Shaponick, grandparents James and Ann Cahill of Albany, NY, William and Sandra Hoffman of Westerly, RI, and many aunts, uncles, cousins, and friends. Ricky was a fifth grade student at the Wampatuck Elementary School. He enjoyed traveling to the White Mountains and Vermont. He was an avid collector and loved swimming, hiking, music and ethnic foods. A Mass of Christian Burial will be celebrated on Wednesday, November 11th in St. Mary of the Nativity Church, Scituate at 1PM. Interment to follow in Union Cemetery, Scituate. Visiting hours will be on Tuesday from 4 p.m.-8 p.m. at Richardson-Gaffey Funeral Home, 382 First Parish Rd., Scituate. There will be a Celebration of Life for Ricky's family and friends directly after the services at St Mary's Church Hall. In lieu of flowers, the family requests donations be made in Ricky's memory to Magical Moon Foundation, PO Box 83, Marshfield Hills, MA 02051 magicalmoonfoundation.org or Dana Farber Cancer Institute, Contribution Services, 6th floor, 10 Brookline Place West, Brookline, MA 02445-7226. Visit www.mem.com for memorial. Richardson-Gaffey Funeral Home (781) 545-0196

We lost Ricky this morning.

Surrounded and held by his mother, step mother and myself, Ricky Hoffman passed away in peace at 9:40 this morning at his mother's house.

Arrangements are still being made and will be published here when confirmed, but plans are for a wake Tuesday November 10th from 4 to 8 PM, and the service at 1 Pm Wednesday, the 11th. We're planning a celebration of life for Ricky at 3 Pm. Everything is being held in Scituate, MA.

I'll write more at a later date..........

Thank you for all those prayers and good thoughts, they do help.

Bill

Not fairing so well.....

Well, Ricky has taken a pretty big downturn over the last few days. We started morphine yesterday, he's been having headaches and some vomiting, and is very weak. He's only had a little applesauce over the last two days, it's pretty clear the days of "crazy breakfast" are likely over.

Friday update...

Ricky is doing okay, still working on the sleep problems and he lately has had tremors which we are hoping to help get sorted out. He's still eating well, but needs help, last night was fresh bluefin tuna (thanks Dan!), white rice and fresh zucchini, he ate the entire plate!

Woke up this morning and gave me a "hey dad!", which I haven't heard in ages and really made my morning. He's had lots of company and today he is having even more.

Bill

Hanging in there.....

Ricky remains content, he's not talking much more than a few words a day, but he is very aware of what is going on around him. He has been eating well (as we all are thanks to efforts of our many friends and family!), but not sleeping so well so we're trying to get that sorted out.

He continues to have no pain or duress, but we do see a continued decline in his overall health. He does love his many visitors as well as the cards and presents he's received, we are very thankful for all the efforts!

Bill

Thursday update..

Ricky has been feeling better the last few days, maybe it's because he's finally getting over his cold (which I now have), maybe it's because he doesn't have six chemo drugs going into his body. Whatever the reason, he has been more alert, speaking a little more and eating without as much assistance as he needed before. Every once in awhile his sense of humor shows up, same old Ricky!

He remains content and really seems to draw strength and blossom when he has visitors. And he has had lots of visitors! We're delighted at all the friends and family that have stopped by and we feel really lucky to be part of this community. The meals that have been brought over to us have been a big help (and so tasty). Ricky got a big kick eating the tacos Tuesday night sent over by Rosie, one of his many favorites on the Wampatuck school staff.

Thanks one more time for the kinds thoughts and prayers!
Bill

Stable and content

Ricky has been stable the last few days. Still working on getting over a cold and cough, but otherwise doing okay. We went to the Magical Moon Foundation get-together Saturday, Ricky enjoyed being there with the fellow knights and eating the cookies that Donna Green always has for him. Lots of "thumbs up"!

Comfortable.......

We went to Dana Farber yesterday and while Ricky's blood counts were okay, we decided after our consultation with the doctors to discontinue the Avastin. It had worked well for us, but the cancer found a way to get around it, like it did for all the other treatments we tried.

Ricky got his monthly antibiotic and another one via IV to try and knock out the low grade fever he has been having.

He's sleeping more each day, has no pain and he seems content. He enjoys his visitors, even if he isn't saying much. He was able to pick up and eat a cheeseburger and fries by himself yesterday, something he hadn't done the last few days. Deirdre went to the market to get him Gorton's fish sticks, one of his favorites, for dinner tonight, I'm sure he'll have the leftovers for Friday's crazy breakfast.

Thank you agin for the prayers and good thoughts.

Bill

Slipping away...............

I'm sorry to report that Ricky's health continues to decline daily. He's not talking much except for a few words here and there. Walking is impossible without help. Either he's had stroke damage or the disease is taking over more and more,

We started with the hospice program last Thursday. Pat and I both have hospital beds, etc at our houses. The entire team of doctors, nurses and even the people who supply the home equipment have all been so very good to us.

He is still eating well, but needs to be hand fed. Fortunately he seems content, he's calm and in no pain.

He's had lots of company the last few days, he still really enjoys being around all the many people who love him so much. Every once in awhile, he'll flash that smile.

We're off to Dana Farber today for our every two week visit. Not sure if they will give him Avastin or not, we stopped all the other chemo drugs Sunday night. It was a very hard choice after two and a half years of fighting.

This morning for breakfast he'll be eating ginger chicken and pan-fried noodles left over from our Tuesday night dinner.

Once again I thank you all for the many prayers and good thoughts.

Bill

Not doing so well.....

Ricky had a great weekend in Vermont, but his condition seems to be worsening almost day by day. He was able to go to school Monday for a few hours, but came home early as he needed to sleep. He's still dealing with a minor cold, which hasn't helped.

He's sleeping more and more, and is able to do less and less. He's not very vocal, and isn't very responsive to questions asked of him. He's having problems with some bodily functions also.

He has no pain or nausea, and he seems content.

He enjoyed tacos last night along with some mac and cheese, which he'll also eat for breakfast this morning.

Thank you for the continuous prayers and good thoughts, they make a difference.

Bill

Numbers good at Dana Farber...but

Ricky's CBC (blood test) was good yesterday, his platelets, ANC, White blood cells, etc were all okay, so he was able to get the Avastin. He did well, no nausea, ate a huge amount of Chinese food for lunch.

That was the good news, the bad news is that the staff noticed that he has really slowed up - he was only able to answer some of the questions asked of him, and everything seems to take more effort. Even getting out of the car requires a few minutes before he is able to exit, and he needs assistance with many things now that used to be so easy. As a parent, it's very hard to watch..........

We're going to Vermont for the weekend, it's one of his favorite places, so we'll make another trip up there.

Not an easy week....

Ricky hasn't been feeling very good this week, he stayed home from school Monday and Tuesday, mostly due to a respiratory bug, but he's been fatigued also.

We've had to make several medication changes, prompted by minor side effects, and in some cases by not seeing any difference with some of the changes we made late last week. We're also switching to as many liquid versions of the medicines as we can since Ricky is having a hard time lately swallowing his many pills twice a day.

He seemed to be feeling better yesterday. He slept until 10:30 this morning and went to school at noon after eating a breakfast of Ginger Chicken and white rice with hot and sour soup for an appetizer.

Thank you for the prayers and good thoughts, we're back at Dana Farber Wednesday.

Bill

Ricky in print

Ricky was in the local paper last week!
http://www.wickedlocal.com/scituate/news/x593038150/Signs-for-Sir-Ricky?popular=true

He's fighting a bad cold, not feeling so great, but he's been very busy and of course he never quits or even complains.

Last weekend he spent Friday night and Saturday at his Grandparents in RI, Saturday night was dinner at Grandma Annie's down the Cape and Sunday he was the guest of honor at "Cars and Copters" in Plymouth. The organizers were just great to us! They went out of their way to make sure Ricky (and all of us) had a special day there, which included "winning" a great raffle prize and a ride in Kenny K's beautiful Ferrari Tessarossa. We all got a helicopter ride too. Lower left picture is Ricky checking out Dad's winter boat project.

Thanks to all!

Bill

Update from Dana Faber

Ricky did okay at Dana Farber yesterday, his blood counts were all okay and he's within three ounces of hitting 80 pounds. He was able to get his monthly antibiotic and the Avastin without getting nauseous. He ate a giant slice of cheese pizza and a happy meal before he left for home. Breakfast yesterday was steak tips, rice and green beans.


That's the good news, the bad news is that we had a meeting with his team and while we do not have current MRI or PET scan data, they strongly believe that Ricky's decline is the tumor breaking loose again. They were not optimistic that he has much longer. The amount of time will be determined by where the tumor growth affects his brain functions. There is no "Plan B", we are out of options.


His medications were adjusted to help his fatigue and malaise, in the hopes of increasing his quality of life, and we were given new scripts in anticipation of changes which may include increased seizures and possible pain. We will keep him on the chemo in the hopes that we are holding back the tumor for as long as we can. He has had no pain except for very occasional headaches that are relieved with just a couple of Tylenol.

He got up on time for school, Pat says he was feeling good, for "crazy breakfast" he ate more steak, some leftover duck, french fries and beans.

Thank you for the prayers and good thoughts.

Bill

Not feeling so great....

Ricky seems to have taken a turn for the worse the last several days. He is moving slow, his processng speed is down, he is very tired and quite weak. Lots of sleeping....

Not sure what is happening, we will get more info this Wednesday at DF..............

He did make it to school all last week, but in late Friday and today.

Prayers and good thoughts always welcome!

Bill

Okay visit at Dana Farber

We did okay yesterday, Ricky was not feeling well in the morning, but looked better by afternoon. His numbers were good: WBC at 3.99, Platelets at 214, RBC at 33.6 and ANC was 1.94. He was able to get the Avastin and had no nausea.

We are going to try Ritalin to help with the fatigue with school starting next week.

Going to a family labor day party, he already packed his bag of goodies!

Thank you for the prayers and good thoughts!
Bill

Getting ready for school

Well, Ricky starts 5th grade September 8th! He is very excited, he just loves his school. Mom got him some new school clothes and he's happy to resume the routine, except for the homework! We were able to go to the Marshfield fair last week, but he could only attend for a short time, he just got too worn out walking.

He's been doing okay, but he's frail and has been been run down the last week or so. It may be the result of one of the medicines, we will know more Wednesday when we return to Dana Farber for treatment.

Enjoying summer camp, feeling okay!

Ricky has been having a great time at camp, and has been able to go everyday without coming home early. Yesterday we were at Dana Farber, Ricky had a good exam and good counts, and he gained more weight (now up to a record 78lbs) so they upped the dosage of some of the prescriptions. He had to have extra Zopham and Benedryl for nausea........but recovered by the end of the afternoon to eat two slices of cheese pizza.

Last weekend we were in Vermont and had a great time, this weekend he is going to Albany to visit his mother's family. He's had a very active summer! The photo is Ricky with his Uncle Doug riding in the truck last weekend.

Bill

Summer camp is fun!

Ricky has had a good week, he has been busy at the All Stars Summer camp put on the CORSE foundation (http://www.patriotledger.com/lifestyle/family/x592698632/Scituate-moms-provide-opportunities-for-children-with-developmental-disabilities) here in Scituate. It's a two week program for special needs kids and Ricky just loves it. He knows many of the people who work so hard on this program, and he's made some new friends as well.

He's feeling okay, somewhat tired, but still so much Ricky. He's had calamari, jalapeno poppers and pizza for breakfast this week. No real issues except a couple of TIAs. We leave Friday to Vermont for the weekend!

Bill

Good numbers at Dana Farber

Ricky's CBC (blood test) results were good yesterday, everything was okay, and his exam was stable. He did have several TIAs Sunday night, which could have been the result of dehydration, we're not sure, but he hasn't had anymore since. He weighted 77 lbs, I thought he would hit 80 lbs since he continues to eat so much. Breakfast yesterday was left over jalapeno poppers and fish and chips.

He has expressed concerns about the tumor coming back, and we're trying to put him somewhat at ease that if it does, we will continue to keep on fighting. But while he remains positive so much of the time, he has his moments like we all do. He has been through so much for almost 2.5 years, or a quarter of his life.

Thank you once more for the good thoughts and the many prayers.

Bill

End of the week...it's good.

I just spoke to Ricky who had just returned from a great trip to the cape for a few days to visit with a favorite Aunt and Uncle. The highpoint was hearing his exploits of extreme amounts and variety of food consumed, I guess he never stopped eating! Oh, he did get some new telephone tags for his collection.

The photo: This was taken last year, at a retreat in Stockbridge, MA by Ricky's Aunt Susan. Amazing natural outdoor lighting!

My guess is he will set a new weight record next week at Dana Farber. He hit 77 lbs last visit, a neew record. He looks good and is presenting no real symptoms from the cancer or the moi-moi. Of course, he does get tired, but is having a great summer, amazing us all everyday with his strength and attitude.

SPECIAL NOTE: This weekend is the Pan Mass Challenge (http://www.pmc.org/), which is the leading fund raiser for Dana Farber. If you have it in you, consider supporting a rider. If you don't know a rider, my friend Jon Siegel from Bolton, MA (ID JS0347) is riding and he is also a cancer survivor thanks to Dana Farber.

Every dollar helps us to further cancer research. We have directly benefited from this research and we have 110% confidence in Ricky's doctors, all of whom do research in addition to patient care. I believe there is no better place for us to be than at Dana Farber.

Thank you all for the prayers and the positive thoughts!

Bill

Holding his own

Ricky has been doing okay, a bad cold, but otherwise he's still enjoying summer.

He was in RI last weekend, and will be going to the cape for a couple of days this week.

He's up to 77 lbs!

Bill

All is okay!

Ricky is still feeling great. No real TIAs in the last couple of weeks, and he hasn't had any other problems except constipation and fatigue. He was in NH with his mom last week and had a great time. Sunday we went whale watching followed by a dinner of fresh bluefin tuna compliments of some friends on the dock who shared some of their catch. He loved it, which isn't surprising since he had sushi the night before along with a ton of Chinese food, the leftovers making for a good "crazy" breakfast Sunday.

Back to DFCI Wednesday for more Avastin, but so far he is amazing us all.

Thanks for the prayers, good thoughts and positive feedback!

Bill

We made it!

Ricky and I had a great trip to the White Mountains. He did well at Dana Farber Wednesday, and we arrived at our cabin by late afternoon. He was swimming within an hour in the outdoor pool. While he does tire easily, he swam for hours, hiked, went to Story land, Clark's Trading Post, the Cog Railway and all the places we go each year. He had but two small TIAs when we first arrived, otherwise he has been feeling really good.

He came over for dinner last night and ate sushi, fish sticks and spaghetti, followed by a Popsicle.

Blood test today, but I'm feeling pretty positive his numbers will be okay.

Bill

All of a sudden, it's July!

Sorry for the delay in updates, but no news is good news in this case. Ricky has been feeling fine, especially since the red blood cell transfusion. No TIAs, good energy, all things considered, he's doing darn good! His numbers last week were okay, no major issues. His food choices remain the same - crazy breakfast was stuffed jalapeno peppers one morning, pizza and pancakes with sausage another. He's enjoying some time off from school, and the extra sleep has been good for him too.

He and I went to the Summernational car show on the 4th, he walked a good couple of miles up and down some big hills on a real July day- it was hot! We've been going to this each year sine he was six, we missed last year because he got nauseous on the ride there, so it was great to be back again. Very emotional for me.

Wednesday we go to Dana Farber, and hopefully he will be able to get the Avastin as planned, because we are going on our annual white mountains trip directly from there. This will be our third year heading north since he got sick and I had my heart attack. I didn't think we would be able ever go again back in 2007.

I've learned so much on this journey, but above all, I have learned that you always have to have faith. Many of you have inspired me. I humbly thank you for that!
Bill

Numbers, numbers!

Here's Ricky on Father's day with his uncle Greg and going to work on some old telephone poles for the tags.

Quick update: Ricky has been feeling pretty lethargic the last several days, it turns out he is anemic. His blood test yesterday was good otherwise: ANC over 2000, platelets were 1.90 but the red blood cell count was way down. Exam was stable, but we have noticed more TIAs and of greater duration and strength over the last couple of weeks. No headaches or nausea so we’re happy about that.

He got his monthly antibiotic, Avastin and two bags of red blood cells. His mother says he has more energy this morning so maybe that was the cure. He’s off the Albany NY to his grandparents and relatives for the weekend.

Thanks once more for all the kind thoughts and prayers, as one of the doctors told me, he’s writing his own story!

Bill

Last day of school!

Today Ricky finishes 4th grade. He goes to the most wonderful school. God bless everyone there who makes his days so special.

His blood test last Thursday was awesome, his ANC rose from 75 Monday to 1410! We were able to go to DFCI Friday morning and get him back on the Avastin. He and I left right from there for Vermont for the weekend. He had been feeling pretty poor, likely with a sinus infection so he was put on the 5 day antibiotic Azithromycin and by Saturday was starting to feel better. We've seen some pretty bad TIAs the last few days, but otherwise he is doing well.

Here he is eating popcorn, Fritos and Skittles with root beer in Vermont. The other pictures are from an early Father's day celebration last night. He did have a stomach issue the other morning, perhaps the jalapeno poppers he ate for breakfast might have been the problem!

The Magical Moon Foundation

Great article in yesterday's Patriot Ledger: http://www.patriotledger.com/archive/x2000485304/Knights-shine-for-Magical-Moon-Foundation There is a typo, Ricky's age is 11,not 7.

Donna Green has really done so much for the kids! It has been really great for Ricky. The web site is: http://www.themagicalmoonfoundation.org/

Ricky is on http://www.themagicalmoonfoundation.org/hallofknights.html

Donna is dong a great job but really needs more help! If you want to get involved, please contact Donna.

Bill

Numbers, numbers.....

Monday's blood counts were still below what we need to resume the Avastin....another test Thursday. He's still fighting a bad cold, and has been under the weather all week.

Bill

School is almost over.....

and Ricky is going to finish the year! June 17th is the last day, he loves school,but he tells me that he is getting very tired by the end of the day. He doesn't have all the energy he once had, he has enough for most of the day, but he naps in the afternoon often. He's been fighting a cold but is still going everyday, he doesn't want to miss anything or anybody.

A couple of pictures from recent visits to Dana Farber. Ricky is with Lindsay Teittinen who does patient surveys and Ricky just clowning around.

Please keep the prayers and good thoughts coming our way!

Bill

At Dana Farber today we were not able to get his Avastin as his ANC has crashed to 50 from 1500. His platelets dropped down to 145K, so we have modified his medications and will have his blood tested again Monday and hopefully go back Wednesday for the Avastin treatment. His exam was stable except for a cold, he looked good. He continues to have clusters of TIAs, otherwise he has had no other symptoms.

For those that follow his food selections, this morning his breakfast was hot and sour soup and double pan fried noodles. Indeed a "crazy breakfast".

Back in school, nice weekend!

Rick is doing alright.........here he is on the boat yesterday with Mike, and pulling telephone pole tags off some old poles in Stonington, CT that Grampa found.

TIAs come and go, and some of them are pretty scary. No headaches,but he does have constipation and related nausea.

No hospital this week, we're all happy about that! Last week's visit was fine, his numbers look great (252K platelets!).

Bill

Doing okay.......

Ricky was in school all week, feeling good most of the time, a few TIAs which come in clusters and frustrate him, but otherwise, all is okay.

Feeling pretty good...

Ricky did well at Dana Farber on Wednesday, platelets were 157K, weight was up to 71lbs!

He's been to school all week. He's had some clusters of TIAs, but in general is doing really well considering all he is going through.

Just some pictures........

Well, I finally got a SD card reader to replace the broken one on my laptop......... Rick continues to feel pretty good. He's had some TIA spells, but is going to school and enjoying life.

First picture is Ricky with Lilly, a dog that he is 1/3 owner with his grandparents. It was a brisk spring day in RI. Picture two is Ricky with Mark Porter, who raised over $22,000 for Dana Farber running the marathon. Thanks to all who contributed! Mark is a super guy, and he brought the most amazing wood craving when we met the day before the race. It was made for Ricky by nuns at a convent where Mark was working. It is titled "Guardian Angel" and you can see a close up in picture number three. It almost brought me to tears when he gave it to Ricky.

Fourth picture is Ricky at Minot Beach in Scituate, with Grace Kitty of course. The last picture is Ricky eating lobster bisque, onion rings and a scallop roll with his brother Mike and me last Sunday at Brant Rock in Marshfield. The boy continues to eat more than most adults, and he hates when I take a picture of him while he's eating.

We are back to Dana Farber Wednesday for treatment and a check up.

Please keep the prayers and good thoughts coming!

Bill

Holding our own....

It's been a good week. Ricky continues to feel well, and we had a great school vacation week off, visiting and being visited.

He's been going to school this week, looks well, and is enjoying the warm weather. His platelets were 152K last week, the highest they have been in months. He's been able to get all his medicines, and also something for the lingering cold he's had as well. We've had just a couple of minor TIAs and no other medical issues.

Bill

A quiet week.....that's a good thing.

Ricky had a good week, he made it to school everyday, including going to the student-teacher softball game Thursday evening. He's had very few TIAs or mini-strokes, almost no headaches or stomach problems. His appetite is still good - he had a large plate of bacon and corn for breakfast this morning.

Overall, he seems to finally be getting over a nagging cold, and the change in medication seem to be what he needed. He has more of his energy back and he's running around the house. The warmer Spring weather is helping us to see less TIAs, and be more active outside, which is good for all of us.

His blood counts were taken on Wednesday and were good, with 88K platelets, so we should be able to continue the Avastin next Wednesday. His other numbers were all stable.

Thanks for all your wonderful thoughts and prayers!

Good Friday was very good

It was a long week, but god gave us a sunny Good Friday and Ricky spent the day with no signs of sickness all day. He was energetic, witty and full of himself, and he ate an amazing amount of food, starting with tacos for breakfast. His brother, Ricky and I went to lunch in Marshfield, overlooking the ocean and Ricky ate a entire blue cheese wedge salad and calamari. We went for a short hike in the woods and Ricky was actually running with Michael. Later we walked the beach, it was a glorious day. For that day, we all forgot the problems.

Wednesday we were at Dana Farber all day, Rick wasn't feeling well and we were glad to get him back for a checkup. His platelets were good at 117K, but he was anemic, so he had a red blood cell transfusion. We also reduced the dose of one of the drugs, which may have helped his overall well being. We had a couple of meetings with the doctors, as we prepare to move to the next phase of his illness, it was a sad day for us, knowing that we must prepare for what may follow.

Thanks for all your notes, prayers and kind thoughts. I know we had the angels with us yesterday. Today, he is on his way to his grand parents in Albany for Easter. God bless.

Mark Porter's letter of solicitation

Enjoy the Journey of life

Tuesday, March 24, 2009

Dear Friends and Family:

This is the fourth time that I have written a letter of solicitation. For those who know me all too well, you were expecting this and I thank you for opening this up once again. For those of you that are receiving this for the first time, I want to thank you in advance for hearing me out.

Each year I write this letter it is for all the previous reasons but in turn each year takes on new importance. We have achieved our previous goals, but since last year I have personally lost both friends and family to cancer. Here we are again, starting at the bottom. We have a whole new set of reasons and a whole new list of people that we want to honor and help. In reality we are in a constant battle with this fight that never stops. It may not be at your door step, but it is definitely knocking on someone else’s door, or God forbid, it may affect you in the future. All of you have been a tremendous help in this battle -- with both financial and mental inspiration. And for that I thank you.

As many of you know, March 1, 2005 was the day that I was introduced to cancer on a personal level. I was diagnosed with large cell type A non Hodgkin’s lymphoma. While recovering I realized that someone else had provided me with the care that would ultimately get me back on the road of recovery -- hopefully for a long and healthy life with my family and friends.

Each year the hospital matches me with a patient partner which is great form of inspiration for me. This year my patient partner’s name is Ricky Hoffman. Ricky turned eleven years old on December 9th. My previous three partners were in various stages of recovery which was inspirational and uplifting. Bearing this in mind when I made the initial call to Ricky’s parents to introduce myself, my mind set was that “all was rosy”. Like the previous three times, I was prepared to meet an eleven year old boy on his way to full recovery. But when I talked to his mother I almost fainted. She told me that Ricky had a rare form of brain cancer that was terminal. I was speechless. For those of you that know me, this is a rare occurrence. It took me almost two weeks to call them back. It was a little bit easier for me then as I was more prepared for the conversation, but as you can imagine Ricky and his family’s situation had not changed. They were blessed with another Christmas and New Year together. Presently Ricky has again been diagnosed with cancer and his battle starts all over and like before both Ricky and his parents are thankful that Dana farber are in their corner doing all that they can to make sure the Ricky has the best care possible and that they as parents make many fond memories that will last them for many years to come of the strength and courage of their son, and the dedication of Dana Farber

I think of Ricky while I am running in the rain, snow, cold and even when I think of the long roads that are ahead of me. I feel genuinely privileged to be associated with such a strong and motivated young man. All my roads seem to be down hill in comparison to the up hill road that Ricky does every day with style and determination.

Last year was the first year that I ran for Dana Farber. It was truly an amazing experience from the start when all the Dana Farber runners first met. We exchanged stories -- both happy and sad which bonded us as a team of hope for the future. With every step from Hopkinton to Copley Square the spectators were like a human conveyor belt, urging us on. One particular instance that touched me was at the corner of Commonwealth Avenue and Walnut Street in Newton at the John Kelley statue. With the statue overlooking me, I was bitching and moaning about the hill ahead (the start of “Heartbreak Hill”). If you can imagine me running/walking in full blown conversation with myself convincing myself that not only was the hill ahead short, but basically flat. Then I noticed an older woman on the side egging me on. She was thanking me for running for Dana Farber and told me she was a cancer survivor. Thanks to Dana Farber she was able to stand there doing her part to help the cause that had saved her life by encouraging the runners up “Heartbreak Hill”. At that moment, this lady was the angel that I needed and she exemplified what an impact Dana Farber has had. This one small gesture was just one example of the experience that I had as a runner wearing the Dana Farber shirt. I firmly believe that the experience of the journey from start to finish is something that is different every year but nonetheless rewarding and inspirational -- and hopefully will continue for many years to come.

I have been dealing with cancer for over four years. I have learned to look at life much differently. I do not take life for granted any more being it was a gift to get the second chance. Life is a journey that we all take. Most do not see it as a journey but more like a trip with a destination. Like every trip, we want to get to our destination as fast as possible -- only to find out when we get there how much that we have missed on the trip. The beauty of a journey is the memories that we create, share or experience, while we are on it. It is those memories we share that touch the lives of those that we will leave when we reach the end of the journey.

My recovery was due to the hard work and dedication of past generations of Bostonians who both encouraged the doctors and researchers and helped them further their work with much needed funds. In keeping with this, I am writing once again to encourage you to give generously to the Dana Farber Cancer Institute of Boston so that others can benefit from the same kind of excellent care that I have experienced. As with any such journey there will be some good news and some bad news along the way. The good news is that in the last three years, we have raised approximately $90,000.00 together – a fantastic amount! The bad news is the economy and each previous year we have been able to beat our previous amount, with last year reaching over $30,000.00. Cancer unlike the economy does not get to have a good year. It is always the worst word that a doctor can say to his patient or the last word that a patient wants to hear. Due to your financial help and Dana Farber’s unending care and ground breaking research, these words have been more bearable for both the patient and their families to hear. Your contribution will help ensure that patients will continue to receive the best medical care possible and that cancer patients around the world will benefit from the groundbreaking research performed at Dana Farber everyday. Our hope is that one day, other families may not have to face the suffering and sadness that cancer patients and their families endure on a daily basis. By giving generously to support this amazing cause, we can truly help the families and patients that depend on Dana Farber to enjoy long and happy lives together.

To accomplish this, I am asking you to help me support the patient care and research missions of Dana Farber. With your contribution, you have the ability to improve the lives of many cancer patients and their families -- for generations of Bostonians.

Live life today being tomorrow may not come as planned.

On behalf of myself, my family and the many families that we don’t know,
Thanks’ for sharing my story
Thanks for all you inspiration
Lastly I thank you for your support.

With best regards,
Mark
Mark Porter
415 Belmont Street
Quincy, Massachusetts 02170
(617)-984-2666
jmpgc@aol.com

or my Boston Marathon site at
http://www.rundfmc.org/markp2009

Ricky has a partner for the Boston Marathon.

Ricky has been chosen by Mark Porter to be Mark's Dana Farber poster child. He's a cancer survivor himself, and he's been raising money and building awareness for Dana Farber since he recovered. His donation page is at: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=283893&supid=100652342

I can't say enough about Dana Farber and guys like Mark Porter.

Bill

Friday, April 3rd

Well, we had a scary week...Ricky had a stroke Tuesday evening, which resulted in a 911 ride to Children's for scans. He stayed overnight, was feeling better Wednesday night at home but he had a 2.5 hour bloody nose Thursday morning. He was able to go to school Friday, albeit a little late. He was very happy to go, he just loves school. Plus, it's pizza day.....and the boy likes to eat.

Long meeting with the doctors while at Children's......bottom line is he is going to have more and likely more severe strokes, and we can also expect he will be experiencing the effects of the tumor growing as well. His scans showed that he's had four strokes that have left a image, the tumor areas look pretty much the same as the MRI two weeks ago. So we have pretty bleak news, between the moya moya related strokes and the growing tumor, he's not likely to make it.

We have a follow on meeting Wednesday at Dana Farber, in the meantime, he is back on the same drug therapy since his platelets are at 120K. Most likely, we will sign a DNR order.

Thanks for all the kind words and good thoughts, they make a huge difference.

Bill

Hanging in there....

We spent the day Wednesday at Dana Farber. Ricky has had a terrible cold since Saturday and he is just now (Friday) starting to return to his old self. He's home today after sleeping 12 hours.

His exam was stable, and good news for us, his platelets were up to 105K, his WBC and ANC were all much better. He weighted 69.9 lbs, a new record, and he grew a little too. So as far as being in good shape for the new treatment, he is in a good spot.

We did the Avastin by IV and went home with the five new chemo meds. He seems to be doing okay with them, but it's only been two nights.

In general, he looks and acts much better than he has in the last couple of weeks or so. His speech is better, he is more responsive and less irritable. He had three big tacos for dinner last night and two more for "evil" breakfast this morning.

Thanks to all for the kind words and prayers.

Choice made on new treatment

After doing our research and weighing the options, we have decided to go for the clinical trial which uses a five drug daily cocktail taken orally, with Avastin every two weeks by IV. While Ricky did clear the wait list for the other program, it involved another MRI and a PET scan, both of which are things Ricky would find very invasive right now. We have also decided that if this new plan causes his quality of life to decline, we will most likely stop.

We hope to start the new treatments Wednesday, assuming his platelets are over 75K. He's had a bad cold since Saturday, not feeling well at all.

Just back from Dana Farber....

As we suspected, the results of the MRI were not good. The existing tumor, in the resection cavity, is not much bigger than the January MRI. However there is now a large area of edema (swelling caused by fluid), on the right side of his brain, which is the result of the tumor spreading. They believe this is what is causing the changes in his behavior we have noticed the last week or so.

They offered three options - do nothing, see if we can get him in a Phase I trial of a drug called AZD2171 or start him next week on a Phase 2 trial using a five drug, anti-angiogenic regimen, with or without Avastin. Both the trials are oral, taken at home, however the Avastin, if used, would be every two weeks by IV at Dana Farber. Rick is tired of the hospital visits, blood tests, etc so these plans have some appeal since he could take the pills at home. Doing nothing is an option for the same reason, however his time could be very short, maybe as short as four to six weeks. It could be longer, they can't predict. They tell us that trying the new drugs brings a risk of toxicity and they have no idea if they might be effective so we are pretty much in the corner. We will decide in the next couple of days.

His exam was okay, platelets were at 65K, and his counts otherwise were about typical of what we have been seeing. They did confirm a slight change in speech, mental alertness, etc. that we have seen.

Monday, Monday......

We had the MRI Saturday morning, and while we don't have the formal results, we were told that the tumor is larger and there is a second new area as well. We will know more detail and where we go from here on Wednesday.

Ricky and I left for Vermont right from the MRI, which really cheered him up. He's feeling ok, but not great, and his memory and energy seem to be slipping. He is however, eating and sleeping well.

Quick update...

Numbers are still not very good, Ricky had 63K platelets today. He got the reduced dose of medicine. No nausea so far today. He has been having more headaches......not a good sign.

If the MRI results are not favorable, we will most likely be switching to another chemo drug.

I expect the MRI results early next week.

We're always thankful for the prayers and good thoughts!

Bill

Numbers, numbers, numbers

Like many things in life, it's about the numbers. Ricky's platelets fell to 61K on Wednesday, which is below the 75K threshold needed for treatment. We had been hoping he would still be around 100K, in which case we would have increased the dosage, but instead, we reduced it by half yet again. So he's getting 25% of the guideline dose. Not sure if this will be effective......

He's also just feeling pretty poor. Malaise, fatigue, TIAs, a slight cold, you know he's not feeling good when he doesn't want to go to eat. He's at a EN&T specialist this morning to see if we can get a handle on the bloody noses which have been happening the last few weeks.

MRI is the 14th...........

Bill

Florida!

A few pictures from our visit to Discovery Cove. What a place!

Good day at Dana Farber

96K platelets! We will likely increase the dose of the chemo next week, since his platelets are doing okay. He had a decent day, out by 2 pm and no nausea for a change. Back again next week!

He's feeling okay, had a couple of great days at school this week, and is in very good spirits.

Keep the good thoughts and prayers coming!

Bill

Boston Globe and Dana Farber......

The Boston Globe ran a front page story in Saturday's paper about the iron workers painting the Dana Farber kid's name on the beams of the new cancer center being built .Not sure how long the link will last, but there is video and pictures as well as the story. Ricky's name is on the building, they did it in one day! He thought that was very cool. I think the iron workers are very cool.

http://www.boston.com/news/local/massachusetts/articles/2009/02/21/steeling_their_courage/

Back from vacation!

We had a great trip to Orlando. He had several TIAs while we were down south, but otherwise no medical issues. We covered lots of parks and the weather was super. I'll get some video and pictures up shortly.

It was a little touch and go for while the day we left. Ricky's platelets had fallen to 63K last Wednesday so he was unable to receive any chemo, which needs at least 75K. On Thursday (Feb 12th), he and his Mom went back up to Dana Farber to see what direction the count was heading before we flew, and it had dropped to 59K. A platelet transfusion got his count up to 94K, so off we went. Today, he had 87K, a good number. We did a 50% reduction in dosage to get the platelets stable. He had no nausea today during treatment.


Bill

Update 2/11/09

Well, not so good news today, Ricky's platelets dropped to 63K from 101K before his first treatment last week. As a result, he wasn't able to get any medicine today, as there is a 75K minimum required. He's going back to Dana Farber first thing Thursday to recheck the counts. We need to know if they are dropping or going back up since we leave for Florida in the afternoon. If they are over 75K, they will give him medicine right then, if they are over 63K, but less than the required 75K then he may not need to have his counts done in Florida. If the counts are lower than 63K, we'll have to test again down there and give him platelets if needed.

I'll keep you posted. He's feeling fine, and very excited about going to Orlando!

New day, new treatment!

Ricky ended up pretty nauseous during his new treatment, but recovered late in the afternoon. He slept in my arms for two hours during therapy and didn't eat at all today while there. He did end up with a new large stuffed cat he named Buttercup.

His blood counts were all okay, 101K platelets, 2.71 WBC, ANC was stable. Exam was stable. Next MRI will be mid March.

I'll keep you posted!

Update from Dana Farber and some pictures

So we had another meeting at Dana Farber today and we are starting a new program for Ricky tomorrow morning, it's called Temsirolimus. The idea is to stop the tumor from growing. This drug has not been helpful in shrinking tumors, but we can get it now, and it has had some success.


At the last MRI, the tumor was 1/3 of an inch in size and not causing any problems so if we can stop the growth, we'll be happy. Once a week he'll get an IV and the side effects are similar to the other programs. There is another option that may open up for him in the next few weeks, but we really can't afford to wait.


About the pictures: To the right below, is Ricky going into the MRI. It's not as bad as it looks, he's wearing goggles and earphones so he can watch a DVD. The camp pictures were from last weekend in Vermont, that's Uncle Doug and Ricky checking out the under construction camp. Very cool. He had a great time. Zero issues, no TIAs, just lots of energy and laughing. The picture of him in front of the 69 Roadrunner and with his favorite kind of model (female) are from the recent World of Wheels show in Boston.

Thanks for all the good stuff being sent our way!

Correction to last post

Ricky was not approved for the trial due to taking aspirin. No way to get that drug.

We're awaiting the next options.

I'll keep you all posted.

Bill

Here we go again......

Well, the PET scan confirmed what the MRI picked up, the tumor is back. It’s small, less than one centimeter, and is located in the cavity that was left from the previous operations. But the fact that there are new cancer cells means we need a new game plan right away. We already suspected that surgery and radiation aren’t viable options at this time, and that's still the case.

After a long meeting with the doctors today, we’re signed up for a Phase II experimental trial of a drug called Cilengitide. Information on the trial can be found at: http://www.cancer.gov/clinicaltrials/COG-ACNS0621

It’s another type of compound for cutting off the blood supply to the cancer cells. You can see a definition here: http://en.wikipedia.org/wiki/Cilengitide

There have been some good results with this drug with adults, and right now, it’s our best choice. It is however much more intensive than the program we were on, requiring one hour IVs every three to four days, indefinitely. Of course, all these trials carry lots of potential side effects, both known and unknown. That said, we hope to start as soon as we can.

Ricky knows that we are going to try another medicine. He doesn't know the new schedule yet since we're not accepted into the study. We were told that Ricky should be approved, but it’s not been finalized. I’ll post more details when we have them.

Prayers and good thoughts please!

Bill

PET Scan done, no results until next week......

It's an easy test, and we've done them before, the actual time for the scan is only 28 minutes.

We will meet with the doctors Wednesday to discuss results.

He'll been feeling great, he had us all in tears of laughter at dinner last night. No TIAs, slight winter cold.

We go to Chinese New Year's Saturday night with Grandma and Grandpa. I am sure he will out eat us all.

I will update the blog after the doctor's meeting.

We may have a problem...........

We had the MRI on Saturday, which went very smoothly. Ricky is able to watch his own DVD while in the MRI and we are all comfortable with the procedure. That's the good part........

I spoke to the lead Doctor tonight, and he tells me the MRI picked up something that requires a PET Scan asap. We're looking for Friday, with a follow up consult during our next visit to Dana Farber January 28th.

He's feeling good, however this could be bad news..........

Please keep the prayers and good thoughts coming, we do need them!

Bill

Boy, it's cold here!

We had our appointment at Dana Farber Tuesday. Ricky's exam was stable, and his numbers all looked pretty good, (WBC 3.61. Platelets 111K, ANC 2.00) so were able to continue the increased Irinitecan. He was nauseous for quite a bit of the time so we will be adjusting the Zopham and Ativan doses next time around. He did recover by mid afternoon and ate a Ricky Maki special (Cooked Eel, tobiko and sesame seed roll). The TIAs come and go, but do not seem to be any worse.

He went to school the next day no problems. MRI is Saturday!

Thanks one more time for all your prayers and good thoughts!

An excellent source of info and a worthwhile charity

I have been reading the email "blasts" from http://www.virtualtrials.com/ for several months now. If you are looking for a good charity and a great source of news, please check out the
Musella Foundation for brain tumor research and information.

Regards,

Bill

Another year!

We spent the 31st at Dana Farber. Rick's exam was stable and his blood test results were good - WBC up to 4.34, Platelets are at 101K, and his ANC is 3.05. We upped the Irinitecan dose by 25% since his platelets are stable. He got sick during the infusions, but recovered by the end of the day.

He's doing well, but he has had a increase in TIAs over the last few days and we don't know why.
We all really did enjoy the time off around the holidays. We needed it!

Bill