Some family pictures

Family has been so important to us during this fight. Ricky loves his family and they really love him so much. Here's just a few of them. His step mom Deirdre, Rick's brother Mike, and my brother Greg are pictured here.

Thursday update.....

Rick spent yesterday at the hospital. His platelets were up to 89,000 which is great news and his white blood cell count was up also, another good thing. His exam was very good, the NP said it was the best she’s seen him. He did have a TIA just as we were leaving, and one more an hour later, no idea what triggered them………….. Scary stuff.

He remains in very good shape – going to school full time, eating well (he weighs 60.5 lbs now), and very active. He got a A- on his first social studies test and a 100% on his spelling test. I couldn’t believe how much sushi he ate Tuesday night. Most adults couldn’t put away that much. He and I hiked three miles last weekend and I had to hustle to keep up with him!

Today is a good day

I just wanted to let you all know that Ricky is really looking and feeling well! It is truly a blessing and a miracle. Yes, he’s still very sick, and we don’t know what tomorrow will bring, but his quality of life is excellent. He is really coming into his own as he matures. I feel so very lucky to have had time with him that I frankly wasn’t sure that I’d have. I spent my birthday last week at Dana-Farber and felt privileged to do so.

Hope and faith is so important in these battles, you can never give up! Thank you for all your prayers and support, it helps more than you might think.

We have no medical visits this week.

Quick update

Just back from Dana Farber - Rick's platelets were at 78,000, so we were able to continue chemotherapy with no changes. Only one TIA in the last two weeks. His exam was stable, he's doing good and enjoying school, except for the homework.

Last week's MRI showed no tumor growth, so for now, we are doing very well. Doctor tells us that Rick's response has been "very dramatic", so they want to continue chemo and add aspirin to hopefully control the TIAs. Increased risk of bleeding but a major stroke could really cause us problems so it's the lesser of two evils hopefully.

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Thank you for all the prayers and good thoughts. The angels are with us.

A few pictures, and we got a STABLE MRI!

Early feedback is that the MRI yesterday was stable! Happy birthday to me! Platelets at 84,000, so we are doing okay!


Ricky with Tom Caron and Dennis Eckersley being interviewed for a NESN Jimmy Fund Telethon. You can watch the interview below.

Ricky having his EEG last week, appears that the TIAs he's been having are the result a capillary on his left side that isn't quite large enough. We are just watching it for now and continuing chemo.
Rick enjoying Heritage Days in August.

Busy week!

We spent three days this week at the hospitals. Monday Ricky had a Brain SPECT test, Tuesday was six hours of chemotherapy and a check up, and Thursday was a CAT Scan-Arterial, and an EEG. He did well taking the tests, but we have no results yet, and likely won’t until after his MRI next Wednesday.

We did get some good news, his platelet count was up to 99K, and his white blood cell count was up to 3.08, both big improvements over the blood test last week, so we can continue to use both drugs. Perhaps we've dodged another bullet.

He’s had a few very minor seizures and some nausea but he remains very positive, very happy, very active and still very much “Ricky”.

Please keep the prayers and good thoughts coming!

Summer

Enjoying summer to the fullest! Rick continues to have a great summer. He has had lots of trips, company, activities and family times. His quality of life is really great considering all he has (and is) going through. Dana Farber last week included a doctor meeting. We’re going to do more tests over the next two weeks to see if we can better understand what may be causing the mini-strokes or seizures. His platelets were up to 75K, which means we may have finally dose reduced the Inrinatecan enough so his body can rebuild his blood counts. He’s been tired and taking more naps than he used to, but he’s still very active and most of the time he feels as he says “great!”. Just a couple more weeks before he starts 4th grade!

Another day at Dana Farber

Rick was at the hospital for almost eight hours yesterday. His platelets remain about the same at 63K, which means we had to further dose reduce the Inrinatecan down to .50/sm, down from 1.25/sm where it started. The tradeoff is getting enough chemo to fight the tumor versus his clotting and immune system being clobbered.

He had a couple of what we think might have been mini-strokes last week that could be related to moi-moi syndrome, which is a condition where the arteries are smaller than they should be feeding the brain. Doctors have to revisit what the course of action will be, as this could be very serious. He can’t take aspirin daily which would be the standard protocol due to the Avastin, but if he ends up having a major stroke, it could be catastrophic. So another trade-off has to be made here too.

He got pretty nauseous at the hospital, on the way home and we had to leave dinner at the Chinese restaurant early. It was a pretty hard time, but he remains positive and upbeat. His fortune cookie read: "The quality, not the longevity, of one’s life is what is important." Certainly very meaningful words to keep in mind as we move forward.

Sometimes no news is good news.

Rick has continued to be stable in regards to his treatments and overall condition. His platelets remain pretty much the same at 62,000. We will most likely dose reduce the Irinatecan next week in the hopes of getting his numbers up. He’s feeling “great!” (his words) and enjoying summer to the fullest. We continue to be concerned about the risks of infection, stroke, seizure, hemorrhage and of course the tumor growing back.

These treatments are a balancing act and tradeoffs have to be made. We can only hope we are making the right choices.

Please keep the prayers and good thoughts coming our way.

Thank you!

Still doing well....

Rick is enjoying summer. We went to Vermont and then the White Mountain of New Hampshire and we had a great time.

He had his chemo last week and it went okay, we did have to decrease the dose of the Irenatecan again as his platelets are still under 100K, but he continues to tolerate the treatment well with no real side effects. He is full of energy and he is as quick mentally as he has ever been. He is starting summer school today and then a bike riding class.

A little wrinkle......

Wednesday saw Rick going back to Children’s for possibly a stroke, seizure or hemorrhage. Three days, two nights and many tests later, those possibilities have been ruled out. The possible cause may have been dehydration, causing a constriction of blood vessels, which may be amplified by the Avastin. He’s home this afternoon and feeling okay.

Good thing is we have lots more data including a fresh MRI, which continues to look like we are pushing this thing back. .

Another good update!

Rick continues to do very well. His platelets were up to 71,000 yesterday and his ANC rose from 1.15 to 1.51, both important for the chemotherapy to continue. Chemo went ok yesterday, some nausea but it passed. His exam was stable once again. Doctors remain impressed.

He finished school on Tuesday and is looking forward to no homework for a few months.

More exams.........

Rick continues to be feeling well. Wednesday we had a neurological exam by Dr. Nicole Ullrich, Director of NeuroOncology at Children’s who has followed Rick for the last couple of years for his Neurofibromatosis (NF). She told us that he is doing “remarkable”. No cognitive or physical affects were noted. Amazing after all he’s gone through, but also why you can never give up hope. No way to know how long we can expect things to last, but for today we seem to have found a way to check the cancer from growing.

She and Dr. Herrington are presenting a paper later this month on the positive relationship between NF and Avastin for treating Stage 4 GBM tumors. Theory is that NF may change the vascular system, allowing for better results than non-NF patients.

His platelets were 56,000 so he’s in good shape for more chemo next week.

School ends next week so he will be going into 4th grade this Fall. I wasn't sure we'd make the end of the school year so this is a great milestone.

Some very good news!

Well, we went back to Dana Farber Wednesday for another round of treatments. His platelets were 58,000, which was fine, but his ANC was down so the dose of Irinotecan was slightly reduced. His exam was fine.

The best part of the day was seeing the MRI films from last week for the first time. Truly amazing, the tumor is maybe 10% of what it was back in March! Swelling has also decreased.

So not only have the drugs stopped the growth, it was even smaller than when they found it six weeks after his last surgery. The 22 cm lump? Gone! They can’t say how long or what more to expect, but the words the doctor used was “very impressive”.

My thanks for all the prayers!

Next appointment is two weeks.

Today, we got some good news!

We had excellent results today! The early results of the MRI scan looked very good, Rick’s neurosurgeon told me there was a reduction in size! That’s pretty amazing news when you look at how aggressive the tumor had been growing. I’ll post more details when we get them, but I did want to post the good news.

Thank you so much for the prayers and good thoughts!

looking good, feeling well

We had a great long weekend! Rick continues to feel well and we were very active working on the boat, hiking, swimming and ending with a massive “super soaker” and water balloon fight. No nausea or headaches, sleeping and eating well.

His MRI is set for tomorrow………..fingers crossed, prayers and good thoughts needed!

Holding our own

Tuesday marked the 10th week of the new therapy. It also marked the day that Ted Kennedy was diagnosed with a malignant brain tumor. My prayers go out to the family, since we know first hand what he’s facing.

Good news for Ricky yesterday, his platelets went up to 60,000, which means we are able to continue the treatments. His exam was stable, and Dr Herrington remains impressed with his condition. He’s been feeling pretty good, a slight cold last week, and some mild nausea, but very active, eating well and up to his old tricks. He remains extremely positive and refuses to let this stuff get in his way anymore than it needs to. There are life lessons here for us all to learn from him.

Important MRI next Wednesday…………….

These drugs can work.

Good research report which just came out yesterday on the use of Avastin

http://virtualtrials.com/news3.cfm?item=4232

Still going strong

Rick has continued to feel well. No side effects except for some mild nausea, and he’s not missed any school. He got a 100 on his spelling test Friday. On Sunday, we walked over three miles and he was up for more. He almost stepped on this snake! I think he jumped a foot when he saw it. Last night we went to one of our favorite restaurants in Hull, Jake’s Seafood, where he claims they have the best Mac and Cheese anywhere. He ate everything on his plate. Afterwards, he convinced me to go walking around and that’s the other picture here. If you know Ricky, you know he was looking for new telephone pole numbers for his ever-expanding collection.

He had a blood test yesterday, and his platelets remained the same as last week at 52,000. Good news that they didn’t drop, but it would have been better if they had risen. His next chemo is set for May 20th and his MRI is scheduled for May 28th. Please keep sending those good thoughts and prayers our way.

Hanging in there!

Rick and I had a wonderful weekend in Vermont with my sister, brother in law and two cousins. It’s his favorite place to go, and he never stopped going the entire weekend! He must have walked eight miles. No symptoms all weekend! He was back at school full time Monday. He is super positive and continues to not let his medical issues become the center of his life. He just deals with it.

Yesterday we had our bi-weekly appointment at Dana Farber. His check-up was very good, and he is exceeding the doctor’s expectations. While we don’t know for sure what is happening, she is feeling pretty positive that the medicines may be working since he’s been so stable. His platelets did drop to 51,000, which required us to go back to the original starting dose of irinotecan, but we still got both chemo drugs plus the monthly antibiotic and he tolerated the infusions well. You can google “irinotecan GBM” for more on this therapy. Thai food for dinner!

Next step is a blood test next Tuesday to check platelets.