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