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