Thursday, February 28, 2008
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!
Saturday, February 23, 2008
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
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
Wednesday, February 20, 2008
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.
Thursday, February 14, 2008
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.
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.
Monday, February 11, 2008
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.
Meanwhile, Ricky went back to school today, all excited. That kid is so strong.
Sunday, February 10, 2008
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…
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…
Friday, February 8, 2008
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.
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.
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
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
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