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