Florida!

A few pictures from our visit to Discovery Cove. What a place!

Good day at Dana Farber

96K platelets! We will likely increase the dose of the chemo next week, since his platelets are doing okay. He had a decent day, out by 2 pm and no nausea for a change. Back again next week!

He's feeling okay, had a couple of great days at school this week, and is in very good spirits.

Keep the good thoughts and prayers coming!

Bill

Boston Globe and Dana Farber......

The Boston Globe ran a front page story in Saturday's paper about the iron workers painting the Dana Farber kid's name on the beams of the new cancer center being built .Not sure how long the link will last, but there is video and pictures as well as the story. Ricky's name is on the building, they did it in one day! He thought that was very cool. I think the iron workers are very cool.

http://www.boston.com/news/local/massachusetts/articles/2009/02/21/steeling_their_courage/

Back from vacation!

We had a great trip to Orlando. He had several TIAs while we were down south, but otherwise no medical issues. We covered lots of parks and the weather was super. I'll get some video and pictures up shortly.

It was a little touch and go for while the day we left. Ricky's platelets had fallen to 63K last Wednesday so he was unable to receive any chemo, which needs at least 75K. On Thursday (Feb 12th), he and his Mom went back up to Dana Farber to see what direction the count was heading before we flew, and it had dropped to 59K. A platelet transfusion got his count up to 94K, so off we went. Today, he had 87K, a good number. We did a 50% reduction in dosage to get the platelets stable. He had no nausea today during treatment.


Bill

Update 2/11/09

Well, not so good news today, Ricky's platelets dropped to 63K from 101K before his first treatment last week. As a result, he wasn't able to get any medicine today, as there is a 75K minimum required. He's going back to Dana Farber first thing Thursday to recheck the counts. We need to know if they are dropping or going back up since we leave for Florida in the afternoon. If they are over 75K, they will give him medicine right then, if they are over 63K, but less than the required 75K then he may not need to have his counts done in Florida. If the counts are lower than 63K, we'll have to test again down there and give him platelets if needed.

I'll keep you posted. He's feeling fine, and very excited about going to Orlando!

New day, new treatment!

Ricky ended up pretty nauseous during his new treatment, but recovered late in the afternoon. He slept in my arms for two hours during therapy and didn't eat at all today while there. He did end up with a new large stuffed cat he named Buttercup.

His blood counts were all okay, 101K platelets, 2.71 WBC, ANC was stable. Exam was stable. Next MRI will be mid March.

I'll keep you posted!

Update from Dana Farber and some pictures

So we had another meeting at Dana Farber today and we are starting a new program for Ricky tomorrow morning, it's called Temsirolimus. The idea is to stop the tumor from growing. This drug has not been helpful in shrinking tumors, but we can get it now, and it has had some success.


At the last MRI, the tumor was 1/3 of an inch in size and not causing any problems so if we can stop the growth, we'll be happy. Once a week he'll get an IV and the side effects are similar to the other programs. There is another option that may open up for him in the next few weeks, but we really can't afford to wait.


About the pictures: To the right below, is Ricky going into the MRI. It's not as bad as it looks, he's wearing goggles and earphones so he can watch a DVD. The camp pictures were from last weekend in Vermont, that's Uncle Doug and Ricky checking out the under construction camp. Very cool. He had a great time. Zero issues, no TIAs, just lots of energy and laughing. The picture of him in front of the 69 Roadrunner and with his favorite kind of model (female) are from the recent World of Wheels show in Boston.

Thanks for all the good stuff being sent our way!

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