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

Another fine weekend

Rick is feeling good. He's got a slight cold, but he is eating well, very active and had a great time at Grandma and Grandpa's house this weekend. He is amazing us all.

He goes for round two of chemo Tuesday.

His mother has started a page for Rick as well. http://www.carepages.com/ You'll need to register (it's free) and then search for RickHoffman.

Regards,
Bill

A very fine weekend

Rick seems to be doing well on the new chemotherapy. Only side effect is some mild nausea. Yesterday we went swimming and then walked close to four miles at Duxbury Beach. He would have walked more, but his brother and I ran out of energy. His appetite is good, he is eating well, but his taste buds are unpredictable. He’s in good spirits and is looking forward to a full week at school with no doctor or hospital visits.

Doing well so far on the new chemo

Rick made it to school for a couple of hours Wednesday, and hopefully all day today. He's feeling well........no side effects yet, but that could change in the next few days. He's happy and active, that makes me happy.

Long day at Dana Farber

We started the new drugs yesterday. It’s the first chemo he’s had since September so we were all anxious. Ricky is feeling very good, looks great and has had no headaches or nausea for the last week. His pre-chemo exam was good; the doctors are impressed with his health and attitude. His platelets reached 94,000, which was great news since the concern was that the new drugs would further suppress his bone marrow. They didn’t want to start anything until he reached 100,000, but I pushed to get going sooner since the clock is running and the tumor isn’t waiting.

It took eight and a half hours before we could leave. Ricky did okay, but did get sick to his stomach half way through and is having blurred vision off and on. His blood pressure was elevated, and he felt pretty poorly. But Ricky being Ricky, we stopped for Chinese on the way home and he had egg drop soup, some Chinese tea and some ginger chicken (he told me the ginger would help his nausea), and he ate well. He took the leftovers for breakfast this morning. Not sure if he’s going to school today or not.

EDIT: He's going to try going to school this morning. He feels "pretty good".

Next treatment is in two weeks. Personally, this was a very hard day for me. Bittersweet that we finally got back into treatment, but hard to watch your child endure something like this when he should just be in school learning math and enjoying his many friends.

Keep sending the positive thoughts and prayers our way!

Bill

Quick update

Rick's platelets were up to 74,000 on Monday. The Monday scans gave the doctors more data, and this will help us moving forward. There was no significant tumor growth between the MRI last Thursday and Monday's scans.

Blue Cross has approved the Avastin and CPT-11 drugs, and we are starting Tuesday. It will be infused every two weeks, thru his port. He's going to his Grandparents in Albany for Easter so this should work out well. As mentioned earlier, Blue Cross has been a godsend for us.

There has been some great success with this combination and we are planning to be one of them.

Google Avastin and CPT-11 for more information on what may be our miracle.

Till the next update.........please keep the good thoughts and prayers headed our way.

Bill

Vermont

Ricky and I had a great trip. He felt really good all weekend. It's hard to believe he's as sick as he is.


Today we have some major tests (PET scan, etc) at Children's. We'll see how that all works out.

MRI results

Rick had his MRI this morning at Children’s. As we had suspected, the results were not good. The tumor is back already, just six weeks after surgery. It’s bad.

Surgery and radiation are not options; all we have left is to go for the chemo in spite of his low platelets, which were at just 70K this morning. We will be starting next week, he’ll get a PET scan and we will immediately start the chemo. Risk of hemorrhage is high, especially since he had brain surgery and has low blood counts, but it’s the best shot we have of slowing this thing up. Better to give it everything we can, than wish we did later.

We are going to Vermont for the weekend to visit my sister and her family. Likely the last trip we’ll make up there, but who really knows. He’s feeling pretty good, just a few headaches and some nausea, so I’ll pick him up at school the end of the day and we’ll be there for dinner. He loves it there; it’s one of his favorite places.

More blood work yesterday......

Rick had his blood tested while at Dana Farber yesterday getting his monthly antibiotic infusion. His platelets are only up by 1,000 to 68,000. Very discouraging as my fear is the numbers are just not going up fast enough to catch this thing. Neurosurgeon at Children’s was very impressed with Rick’s recovery from surgery, but also said he would need a “compelling reason” to consider operating again. The MRI has been moved to Thursday and will be very telling as to what happens next.

Numbers moving up!

Just got the results of this morning's blood test. Platelets are now at 67,000. We're gaining. MRI planned for March 17th. Another blood test in a week. He is having some issues with nausea, which may be just a stomach bug going around his classroom. Seems strange to hope he has a virus, but it's lesser of two evils, as it could signal that the tumor is growing back.

In school all week......

.......and he got a 100 on his spelling test yesterday! He's doing Tong Ren and accupunture this morning.

Update

Rick had his blood tested today, and his platelets went up to 57,000. He’s going in the right direction! We are hoping to reach the 100,000 magic number soon so we can start chemotherapy again and keep this thing from coming back. He’s been feeling good, no headaches or nausea and in school full time. Next blood test will be in a week. Prayers and good thoughts please!

Back to snow

Well, we beat a major snowstorm home Thursday night. Friday’s air travelers had a much harder time. The trip really was great for all of us. He’s had no headaches or nausea the last few days so maybe it was all the sun and fun……….

Ricky had his first blood test in nine days Friday morning. He was at 80,000 platelets then, but he had gotten six units of platelets during surgery (had 110,000 right afterwards).

We were hopeful that we’d get a number north of 80,000 since we need 100,000 before we can start any new treatments, but had been warned by the doctors that he might very well continue to drop, and he did – down to 48,000. That means he is making platelets, but not enough. So it will be a week before he’s retested and we’re hoping to see the numbers go in the right direction.

He needed a haircut, as his hair that had been shaved for surgery is growing back very quickly, so after eating a order of nachos and three tacos at Taco Bell, we both got haircuts. His incision is healing well, and within a week or two will be only slightly noticeable. His only medication is Keppra, an anti-seizure drug, which he will stay on until seen by the Neurosurgeon in the next week. He’s never had a seizure….

We’re leaning at this point with going with the two drug treatment plan. Irinotecan (CPT-11) and Bevacizumab (Avastin). I’ve researched treatments extensively, and this seems to have the best shot. If you wish more info, here’s some links:

http://clincancerres.aacrjournals.org/cgi/content/abstract/13/4/1253
http://www.virtualtrials.com/avastin.cfm

Enjoying the warm weather

We took off for Tampa Sunday, and we've had a great time. Rick has been getting some headaches and nausea, but not too often or too severe. But I'm a little worried of course...

He's able to swim as long as he doesn't get his head too wet, and I've got him pretty well bandaged up. Could be warmer, but hey, we needed some time to regroup and there's no place like here. He's walked a few miles each of the last couple of days and is eating like a guy twice his size.

Quick update....

Ricky had his bandages removed yesterday while we were at Dana Farber. The doctors thought he looked excellent! The incision is easily a foot long along his frontal lobe, but healing well and his hair is growing back. He hasn’t needed any pain medicine for the last three days. He gained a few pounds, up to 57.5 lbs, his highest weight ever. He is cleared for take off; we are going to Florida Sunday! He went to school today wearing a baseball cap, but he went back to school. He continues to amaze me.

As to treatment options, there are three different plans that are being considered. One involves a single drug, one uses two, and the last one is a five drug cocktail. It will be awhile before we select one, as his platelets need to be over 100,000 before any of them can be started. Yesterday they were at 80,000. That’s not a bad number, as he’s been as low as 3,000, but before we started treatments last Spring, he had 543,000.

All three plans are experimental, and all three are unproven and have fairly high risks of side effects. We’re hoping to shrink what is left of the tumor cells, as it’s doubtful we can get rid of them altogether, as the tumor is just so aggressive. It’s learned to get around heavy radiation (seven weeks worth, six weeks is the normal plan) and heavy chemotherapy (Temador and CCNU), and it grew back very quickly so we’re in a pretty tough spot. It’s not hopeless, but it’s not going to be a cakewalk. The doctors feel pretty strongly that there is still some tumor remaining after the surgery. With these tumors, there are almost always cells left behind. It only takes one to start things up again.

Next MRI will be in a couple of weeks as we start treatment, we’ll know better then where we stand. Meanwhile we are looking forward to some sun and fun for a few days during school vacation next week.

Thank you for caring and your prayers.

Next appointment: Wednesday

We're going to Dana Farber Wednesday to meet with the doctors. They are still waiting for the pathology report and Dr. Kieran is just coming back from his trip today. We should get the proposed treatment plan when we meet and Rick will get checked out as well.

Meanwhile, Ricky went back to school today, all excited. That kid is so strong.