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.

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

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.

What a difference a week makes!

Rick is doing great! Just one week ago he was in ICU on IVs and a catheter. We were not sure what the effects of the surgery would be, or if there would be other complications.

I picked him up at his Mom's at 4 pm yesterday. He said he was hungry, wanted White Castle Burgers. So I said we would go to the market and he told me he was really hungry, and tired of eating in so suggested we go somewhere we that hadn't eaten in awhile. He picked La Dat, an Asian place in Hull. He had a California roll (all six pieces), half a cup of crab soup, and ginger chicken with house fried rice. Seconds on the rice. We went to Shaw's and got snacks and his frozen burgers, he had two when we got home as well as some chips and an ice cream. For breakfast his morning, he had the left over fried rice and two more White Castle burgers.

If the cure was just surgery, we’d be in such great shape, but we know now more than ever we have to find a way to stop this from coming back. But for today, we’re happy he’s doing so well. If he didn’t have his head bandaged, you wouldn’t know he had the surgery. He’s that active and so much the same “Ricky”. Children clearly have amazing healing abilities, and we were lucky that it was a situation that we caught in time, and was operable. Not all are so lucky. I thank god again for the good cards we did get. It could be so very different today, but instead his grandparents are coming to visit. Last time they saw him was at Children’s. They are going to be delighted…

No calls from the Doctors.....

Well, the team had planned to meet Thursday and start deciding on a plan for Rick. It wasn't clear they would have the complete pathology reports, and Dr Kieran, Director, Pediatic Neuro-Oncology at Dana Farber, and Ricky's primary oncologist was not due back from a trip until today. So I'm not surprised we haven't heard from them today. Nothing is going to start for a couple of weeks when he has a chance to recover from the surgery and hopefully his blood counts have improved. There's enough time to develop the treatment plan. We've already discussed several options.

Ricky had a good day - feeling better each day. Maybe back to school for a couple hours on Monday if's he's up for it. He's nervous about going back to school with his head shaved and the big bandages. Only have one week and then vacation, hopefully we can go somewhere warm for a few days.

The value of access to the best medical care

Well, since this a blog, I’m going to share my observations and views as they relate to my son. I feel very blessed and fortunate to be living in an area that has world-class medical professionals and facilities. In less than an hour’s time, we can be at our three hospitals: Children’s Hospital, Dana Farber Cancer Institute and Brigham and Woman’s Hospital in the Longwood Medical area in Brookline, MA. Staffs from all three of these world-class medical institutions are on Rick’s team. The three hospitals are connected by third floor walkways making it easy for staff and patients to move where needed. These are also leading research centers and leading medical teaching hospitals tightly connected with Harvard University and other medical schools as well. Knowing that you have the best has been a great comfort and a key factor for Ricky’s health.

While on the subject of the best, Blue Cross and Blue Shield of MA has been providing our employee health plan for many years, and I can’t say enough good about them. They have gone above and beyond to help us, including helping find one of the chemo drugs on very short notice and getting it to us in a day. Their team of aftercare specialists has been very much appreciated, as has their coverage of benefits.

I can only imagine how it must feel to be in a remote area with no insurance or resources. Healthcare has to be fixed in this country. No family should have to face that scenario but many do.

Friday, Febuary 8th, 2008 First entry

I know that there are many people who are following Ricky, many with good thoughts and prayers and I'm hoping this blog will provide a way for me to keep everyone up to date on Rick.
A week ago, we were at Children’s Hospital in Boston for an emergency MRI scan for Rick. Over the last two weeks, he had been feeling like he had the flu or a bad cold. Not surprising since his family all had it and many students were out sick with it as well.

He’s had neutropenia (see http://en.wikipedia.org/wiki/Neutropenia for more information) since mid-September from the chemotherapy but hadn’t gotten sick in all that time, so we figured it was just a question of time before he caught something. But he also had the two main symptoms he had when first diagnosed with Stage 4 Glioblastoma multiforme (GBM) brain cancer (see http://en.wikipedia.org/wiki/Glioblastoma_multiforme for more information), the headaches followed by waves of nausea so we were concerned. Turned out we were right, they found a 5.4 cm tumor located right where they had removed a 6.2 cm tumor in May.

His last MRI, December 1st showed everything stable, and a follow on PET Scan didn’t show anything definitive. The doctors said it had grown this big in just eight weeks, and at the rate it was growing (“impressive” was the medical term they used) it would kill him within two weeks to two months. To say we were heart broken is putting it mildly. After having a frontal lobe craniotomy, seven weeks of radiation, heavy chemotherapy, we were back were we started. There were only two choices, operate or move to “care and comfort”, meaning no further treatment. We went for the operation, the tumor is in a spot they could get at, and in an area of the brain not used for much as far as we can tell. Plus, his first surgery went excellent, with no side effects or diminished abilities of any type. He was doing better in school (third grade, Wampatuck School, Scituate, MA) than ever.

He needed the surgery right away so last Saturday, at 7:30 in the morning, Dr Edward Smith of Children’s lead the team to remove the tumor. Dr Smith is simply amazing, and the confidence I have in him is 110%. I had asked him if he would do the operation if it was his son, and he told me absolutely. That was all I needed to hear.

Surgery went very well, at 12:45 PM, Dr Smith came out and told us he was very happy with the surgery, and Rick was stable. He told us he was as aggressive as he could be to remove everything he could without impacting Rick’s quality of life. Left side weakness was a strong possibility.

Three hours later he was playing with his Nitendo Duel Screen with both hands. We stayed in ICU for the night, had a follow on MRI Monday morning and spent the next two days in room 919 at Children’s.

Okay, so that’s some background, I will add more later, but as of today, Friday, he is doing very well. Appears to be 100% back to his old self.

Doctors will let us know the next steps to keep this from coming back today. His MRI after surgery was very good, but chemotherapy will be required for sure. Most likely no more radiation unless its stereoscopic. No more Temador, and he’s out of the clinical trial we were in as his bone marrow just couldn’t hold up to the drugs. He needs it working to build platelets and white blood cells in order to get more chemo. Too much time went by between the treatments, which at least in my mind, didn’t help keeping this cancer in check.

Thank you for all your support and for your many prayers. I think Ricky is on at least thirty church prayer lists and we’ll take thirty more please!

Bill