Merry Christmas and Happy New Year

Merry Christmas and Happy New Year!

Ricky had a great Christmas and except for some TIAs, which frustrates him, he's been feeling good, but a little tired from the holidays. We are back at Dana Farber the 31st. Here's a few photos from his birthday and Christmas.

We never could have gotten here without you.

Thanks to you all!

Looking forward to Christmas!

Well, if you asked me a year ago, I couldn't tell you if we'd all be here for the holidays, but yes, we're going to make it! He looks great and we are enjoying every moment.

Ricky's blood counts were good yesterday, in spite of having a bad cold. WBC was 4.29, he had 100K platelets, and an ANC of 2.86. Chemo went good yesterday and he had a stable exam.

MRI is set for January 17th, but we've not seen anything that worries us. The TIAs remain manageable.

I thank you all for your prayers and blessings this year.

Merry Christmas!

Bill

Geez, it's already December 16th!

Just realized how much time has passed since I last posted. Rick has been stable, except for the same colds we all seem to have this winter. Some minor TIAs, but his counts look better each time we test and he is enjoying himself.

We *really* celebrated his birthday December 7th.

We're back at Dana Farber this week and I will update again after our visit.

Two weeks since our last visit.....hanging in there quite fine.

We spent the day at Dana Farber. Wednesdays are usually busy as it’s Jimmy Fund Brain Tumor Clinic day, and today was no exception. We also needed the monthly antibiotic and that adds an hour to the cycle, but he felt pretty good during the treatments, better than the last couple of times. Atavan orally and Zophram by IV seems to work well.

His exam was stable once again (“He looks really good!” from the PA). His blood counts and liver functions were stable and he had 100K platelets. That’s a positive since he started out with 347K when first diagnosed, and the number dropped to as low as 5K during early treatments. He’s been holding his own the last few sessions which is good news, since it’s a high enough number that we are able to increase the dosage of the Irinotecan at our next visit in two weeks.

He’s had a couple of headaches, some mild nausea, but only a few TIAs over the last couple of weeks. He’s been in school full time and doing very well, going to CCD, visiting family and friends, and pursuing all his hobbies and collections with vigor to say the least. He is remarkably unlike what you might expect after all this. He is 100% Ricky, and he’s loving life. Those of you whom have seen him know just what I mean.

Our journey continues……….please keep the prayers and good thoughts coming our way!

Update from 11/04 Dana Farber visit

Here are a couple of pictures from “Immigration night” at Rick’s school. He’s explaining his display about the Irish immigration and its affect on our country, and he’s with one of his favorite teachers, Jean English.



We learned on Tuesday that the TIAs are from the Moya Moya, not related to the tumor or the treatments. The doctors remain very impressed with the results of the chemotherapy and at this time, they wish to continue to treat the tumor, and hope that managing hydration and temperature changes can reduce the TIAs. It’s a trade-off, and we can only hope that Rick can get through this as well as the cancer. His brain is growing new capillaries to feed the affected area, and its possible this may work out. It’s also possible the Moya Moya could trigger a major stroke.

His exam was very good, and his platelets were 101K, white blood cell count was up as was his ANC. Except for some mild nausea, constipation and the TIAs, he is doing remarkably well. Weight was up and he’s missed very little school.

Interesting article on Avastin being fast tracked for brain cancer here: http://virtualtrials.com/news3.cfm?item=4419

Please keep the prayers and good thoughts coming.

Bill

Update - more TIAs

Rick has been feeling well, but has had several TIAs or "mini-strokes" the last week which we believe to be from the Moya-Moya syndrome (http://www.childrenshospital.org/clinicalservices/Site2156/mainpageS2156P9.html .

They have lasted from 2-10 minutes, and he loses most of the right side functions. Otherwise, he's been in school and very active.

Meeting with the doctors next week to discuss......

Keep the prayers and good thoughts coming!
Bill

Some good news........

Good news to report: Early last week, Ricky started having symptoms very much like the previous three times he had the tumor so last Wednesday we had a MRI done and the results were very good. No tumor visible, no new growths! Doctors think he may have had a virus that presented the same symptoms. We are VERY relieved! This week we went to Dana Farber and Rick had a very good exam, his platelets hit 101,000, that’s the best they have been in many months. We were able to increase the Irinotecan dose by 25% as a result. Rick had his flu shot as well as his monthly antibiotic yesterday along with the anti nausea and chemo medicine, so he was not feeling that good this morning but went to school just a little late. He loves school and has been doing very well, spelling tests have all been 100% for example. We are so proud of him and he is an incredible inspiration.

There is new research from Duke that highlights the effectiveness of Irinotecan, especially when combined with other drugs, like Avastin. See: http://neuro-oncology.dukejournals.org/cgi/content/abstract/15228517-2008-075v1

Last, he had his eye exam Monday, which looked great, no issues from the radiation last year or any other potential problems. He doesn’t have to go back now for a year.
Once again, we thank you for the prayers and good thoughts. I’m sure the angels are listening.

Wednesday Oct 8th Update

We had our every two-week visit at Dana Farber yesterday. Rick’s platelets climbed to 96,000, his White Blood Cells also increased, and his ANC continues to raise, all good stuff. His exam was stable, and he continues to feel “great” (his words). We added Ativan for his nausea during chemotherapy, which seemed to help a lot. Pizza Uno last night on the way home. He went to school today, a little tired but otherwise, he’s having no side effects except constipation and still an occasional TIA. He looks great!

He has been in Albany NY and Perkinsville VT with family the last two weekends and we're going to RI this weekend, he's a busy guy! He has more energy than we all do!

The next MRI will be November 8th. Please keep the prayers and good thoughts coming.

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.

FYI, you can get automatic updates of this blog by subscribing down the very bottom of this page.

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.