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.

Tuesday, April 29, 2008 update

Rick had a excellent trip to NYC with his Mom. He loved the city. Still feeling good, back at school full time yesterday and hopefully today too.

Another round of Chemo.....

Rick had his third treatment yesterday and it went pretty well. Seven and a half hours, some nausea, but otherwise he is holding up well. His exam was very good except his platelets dropped from 88,000 to 66,000, which is an issue since he needs 75,000 to continue to receive the same doses and if he drops below 50,000, they will suspend treatment. Next treatment is two weeks, and MRI in a month.

He and I hiked for around five miles Monday. He’s on his way to NYC for the next four days with his mother made possible by the Make-a-wish foundation.

Thanks for the prayers and good thoughts

Friday, April 18, 2008

Just a quick update before the weekend and the start of school vacation. Rick got rid of his bad cold and was able to go to school all but Monday this week. He has been feeling really good, and he’s very active, running around the yard last night with his brother for an hour. He's glad to have the week off and he has some special plans.

I spoke with Dr. Herrington from Dana Farber yesterday and she is somewhat surprised but very happy that he’s feeling so well between the tumor and the chemo. She also told me that it's possible the new medicine is already slowing the growth of the tumor. We'll take "stable" for now.

So we’ll count these as good days!

Next MRI will be around 3-4 weeks, and we are back at Dana Farber for chemotherapy Tuesday.

All is okay.......

Nothing new to report, which is good news. It's been a week since the second treatment and beside a nasty head cold, Ricky has had no major side effects or complaints related to the tumor.

He's in school pretty much full time and doing well. Last night we shopped for his mom's birthday present and had a nice diiner at Friendly's. He managed to get a webkinz and a bunch of CDs out of me before we left the mall. That's my boy!

Bill

Doing well after yesterday's treatment

Aside from mild nausea and a tempory fogging of his right eye, he did well at Dana Farber yesterday. Dr Herrington said he looked great, better than she expected and that he was "tough as nails". We knew that already! We came back to the office afterwards and he was really excited that my office mates had collected a bunch of CDs for his collection. It made his day, thank folks!

He ate a ton at the local Thai place and had left over Pad Thai this morning for breakfast and is on his way to school.

Next treatment is in two weeks.

Bill