Hanging in there....

We spent the day Wednesday at Dana Farber. Ricky has had a terrible cold since Saturday and he is just now (Friday) starting to return to his old self. He's home today after sleeping 12 hours.

His exam was stable, and good news for us, his platelets were up to 105K, his WBC and ANC were all much better. He weighted 69.9 lbs, a new record, and he grew a little too. So as far as being in good shape for the new treatment, he is in a good spot.

We did the Avastin by IV and went home with the five new chemo meds. He seems to be doing okay with them, but it's only been two nights.

In general, he looks and acts much better than he has in the last couple of weeks or so. His speech is better, he is more responsive and less irritable. He had three big tacos for dinner last night and two more for "evil" breakfast this morning.

Thanks to all for the kind words and prayers.

Choice made on new treatment

After doing our research and weighing the options, we have decided to go for the clinical trial which uses a five drug daily cocktail taken orally, with Avastin every two weeks by IV. While Ricky did clear the wait list for the other program, it involved another MRI and a PET scan, both of which are things Ricky would find very invasive right now. We have also decided that if this new plan causes his quality of life to decline, we will most likely stop.

We hope to start the new treatments Wednesday, assuming his platelets are over 75K. He's had a bad cold since Saturday, not feeling well at all.

Just back from Dana Farber....

As we suspected, the results of the MRI were not good. The existing tumor, in the resection cavity, is not much bigger than the January MRI. However there is now a large area of edema (swelling caused by fluid), on the right side of his brain, which is the result of the tumor spreading. They believe this is what is causing the changes in his behavior we have noticed the last week or so.

They offered three options - do nothing, see if we can get him in a Phase I trial of a drug called AZD2171 or start him next week on a Phase 2 trial using a five drug, anti-angiogenic regimen, with or without Avastin. Both the trials are oral, taken at home, however the Avastin, if used, would be every two weeks by IV at Dana Farber. Rick is tired of the hospital visits, blood tests, etc so these plans have some appeal since he could take the pills at home. Doing nothing is an option for the same reason, however his time could be very short, maybe as short as four to six weeks. It could be longer, they can't predict. They tell us that trying the new drugs brings a risk of toxicity and they have no idea if they might be effective so we are pretty much in the corner. We will decide in the next couple of days.

His exam was okay, platelets were at 65K, and his counts otherwise were about typical of what we have been seeing. They did confirm a slight change in speech, mental alertness, etc. that we have seen.

Monday, Monday......

We had the MRI Saturday morning, and while we don't have the formal results, we were told that the tumor is larger and there is a second new area as well. We will know more detail and where we go from here on Wednesday.

Ricky and I left for Vermont right from the MRI, which really cheered him up. He's feeling ok, but not great, and his memory and energy seem to be slipping. He is however, eating and sleeping well.

Quick update...

Numbers are still not very good, Ricky had 63K platelets today. He got the reduced dose of medicine. No nausea so far today. He has been having more headaches......not a good sign.

If the MRI results are not favorable, we will most likely be switching to another chemo drug.

I expect the MRI results early next week.

We're always thankful for the prayers and good thoughts!

Bill

Numbers, numbers, numbers

Like many things in life, it's about the numbers. Ricky's platelets fell to 61K on Wednesday, which is below the 75K threshold needed for treatment. We had been hoping he would still be around 100K, in which case we would have increased the dosage, but instead, we reduced it by half yet again. So he's getting 25% of the guideline dose. Not sure if this will be effective......

He's also just feeling pretty poor. Malaise, fatigue, TIAs, a slight cold, you know he's not feeling good when he doesn't want to go to eat. He's at a EN&T specialist this morning to see if we can get a handle on the bloody noses which have been happening the last few weeks.

MRI is the 14th...........

Bill

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