Correction to last post

Ricky was not approved for the trial due to taking aspirin. No way to get that drug.

We're awaiting the next options.

I'll keep you all posted.

Bill

Here we go again......

Well, the PET scan confirmed what the MRI picked up, the tumor is back. It’s small, less than one centimeter, and is located in the cavity that was left from the previous operations. But the fact that there are new cancer cells means we need a new game plan right away. We already suspected that surgery and radiation aren’t viable options at this time, and that's still the case.

After a long meeting with the doctors today, we’re signed up for a Phase II experimental trial of a drug called Cilengitide. Information on the trial can be found at: http://www.cancer.gov/clinicaltrials/COG-ACNS0621

It’s another type of compound for cutting off the blood supply to the cancer cells. You can see a definition here: http://en.wikipedia.org/wiki/Cilengitide

There have been some good results with this drug with adults, and right now, it’s our best choice. It is however much more intensive than the program we were on, requiring one hour IVs every three to four days, indefinitely. Of course, all these trials carry lots of potential side effects, both known and unknown. That said, we hope to start as soon as we can.

Ricky knows that we are going to try another medicine. He doesn't know the new schedule yet since we're not accepted into the study. We were told that Ricky should be approved, but it’s not been finalized. I’ll post more details when we have them.

Prayers and good thoughts please!

Bill

PET Scan done, no results until next week......

It's an easy test, and we've done them before, the actual time for the scan is only 28 minutes.

We will meet with the doctors Wednesday to discuss results.

He'll been feeling great, he had us all in tears of laughter at dinner last night. No TIAs, slight winter cold.

We go to Chinese New Year's Saturday night with Grandma and Grandpa. I am sure he will out eat us all.

I will update the blog after the doctor's meeting.

We may have a problem...........

We had the MRI on Saturday, which went very smoothly. Ricky is able to watch his own DVD while in the MRI and we are all comfortable with the procedure. That's the good part........

I spoke to the lead Doctor tonight, and he tells me the MRI picked up something that requires a PET Scan asap. We're looking for Friday, with a follow up consult during our next visit to Dana Farber January 28th.

He's feeling good, however this could be bad news..........

Please keep the prayers and good thoughts coming, we do need them!

Bill

Boy, it's cold here!

We had our appointment at Dana Farber Tuesday. Ricky's exam was stable, and his numbers all looked pretty good, (WBC 3.61. Platelets 111K, ANC 2.00) so were able to continue the increased Irinitecan. He was nauseous for quite a bit of the time so we will be adjusting the Zopham and Ativan doses next time around. He did recover by mid afternoon and ate a Ricky Maki special (Cooked Eel, tobiko and sesame seed roll). The TIAs come and go, but do not seem to be any worse.

He went to school the next day no problems. MRI is Saturday!

Thanks one more time for all your prayers and good thoughts!

An excellent source of info and a worthwhile charity

I have been reading the email "blasts" from http://www.virtualtrials.com/ for several months now. If you are looking for a good charity and a great source of news, please check out the
Musella Foundation for brain tumor research and information.

Regards,

Bill

Another year!

We spent the 31st at Dana Farber. Rick's exam was stable and his blood test results were good - WBC up to 4.34, Platelets are at 101K, and his ANC is 3.05. We upped the Irinitecan dose by 25% since his platelets are stable. He got sick during the infusions, but recovered by the end of the day.

He's doing well, but he has had a increase in TIAs over the last few days and we don't know why.
We all really did enjoy the time off around the holidays. We needed it!

Bill

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.