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
Friday, September 25, 2009
Tuesday, September 22, 2009
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
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
Thursday, September 17, 2009
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
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
Monday, September 14, 2009
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
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
Thursday, September 3, 2009
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
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
Tuesday, September 1, 2009
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.
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.
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