Click here for Eric's diagnosis and disease information
4/7/02
Eric is beginning to have trouble walking and he is sleeping a lot again. When he is awake, he is alert and aware. His spirits continue to be excellent, and he is in no pain. He attends school 1.5 hours a week with his wonderful assistant, Ann. I'll try to keep you posted.
3/12/02
Where do I begin? I'll try to make it brief, but knowing me....that may be impossible!
Eric's decline from August was slow but steady. He started school on time and attended regularly with the assistance of a full-time aide provided by the school district. In On October 21, Eric as we knew him, went away. He lost his speech, awareness of what was going on around him, his ability to walk, and feed himself. He was incontinent and sleeping 20 out of 24 hours. He had no use of the right side of his body. He drooled. He had trouble swallowing. He had double vision. When he did get up, he'd forget he couldn't walk and he'd take some terrible falls. A CT scan showed no visible change in the tumor, so no one knows what happened or why. At that point, we were advised that we had a month, "maybe two" with Eric.
Many of you know that I spend a lot of time online playing board games. I have a regular partner that I play with every day and have for about a year and a half now. About this time, George Harrison (the Beatle) developed a brain tumor and chose Staten Island University Hospital for his treatments. My Scrabble buddy, Frank, had been relentlessly pestering me for quite some time about Staten Island, to the point where I finally told him to shut up about it or I wouldn't come out and play anymore! His most persuasive argument was that if George Harrison, who has more money then God and could go anywhere in the world he wanted for treatment chose Staten Island University Hospital, didn't I think it was at least worth looking into? So, mainly to pacify Frank, I sent Eric's films to Staten Island. Although similar to procedures done here in Florida, Staten Island promised no discomfort during the procedure and virtually no side effects. (in Florida, they would have had to surgically implant a "halo" into his skull, or have him bite a dental implant during treatments--neither of which were acceptable. Also, our Florida radiation oncologist gave Eric a 10-40% chance of catastrophic side effect, including paralysis and blindness. So we had passed earlier on on the Florida procedure).
December was a whirlwind of activity, as I took Eric to New York on four separate occasions to receive the radiation treatments. He was so far gone that I stayed up all night with him one night just willing him not to die--to just wait until we at least got home. He was 95# of dead weight, and I had to lift and carry him everywhere...plane, taxi, van, bed, potty, etc. I only outweigh him by 10#.
Although we had no real hope, we persevered with the treatments. Our goal was to NOT have him die during the holiday season. We wanted to get past that.
As we approach Easter, Eric is a walking, talking bundle of energy. Although still like a big toddler (he has little balance or sense of direction--just that need for speed!) and his speech is slurred at times and he's unable to attend school, he is awake, alert, smiling, eating, on a normal schedule, and able to initiate and respond to conversation. He still requires 24/7 supervision, but we no longer feel the need to sleep in his room with him (we actually split that duty for 4 months).
We must stress to you as they have stressed to us that this is NOT a cure...merely a procedure to buy us some quality time. We don't care. He is happy and participating and our lives are as normal as they're ever going to be again. His future and prognosis are as unknown as ever, but we definitely treat each day as a gift.
So, online contacts aren't all bad...Frank got to meet Eric and the boys when we went to NY (we took everyone one trip and did some site-seeing). We have been so firmly supported by everyone around us (most notably Faith Lutheran Church, which financed our trips back and forth) for which we thank you all from the bottom of our hearts.
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8/24/01
Over the last couple of weeks, Eric's been exhibiting some definite neurological symptoms, such as lopsided gait, marked right side weakness, slurred speech. It's either the tumor or the thalidomide...maybe just more radiation side effects....who knows. He went this afternoon for an MRI, and we'll keep you all posted.
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8/6/01
Again, my apologies for the length of time it has taken me to update this site! Things are status quo for the most part. Eric's last dose of chemo was in January, and we opted not to continue that form of treatment. We also decided against the radiation surgery at the last minute. The good news is that Eric's June MRI showed no change in the tumor since February. He continues to take his thalidomide, but that is the only "treatment" he is receiving at this time. As a result, he is happy, "healthy," active and mouthy! He is scheduled to start school with Zach and Joey on August 20. Pretty good for a kid who isn't even supposed to be here!
He has his daily struggles, to be sure, such as his memory loss and inability to concentrate, which seem to have worsened a bit. He suffers from frequent migraines. He tires easily and is very emotional at times.
We harbor no illusions about his future and treat each day as a gift. We continue to try to expose him to different things and make sure he and the little boys have lots of fun times together.
Your prayers, kind words and financial support means the world to us. I did return to work this month, but since Eric is stable, it's the most "normal" we've been in two years!
Thank you all so much!
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3/10/01
I'm sorry it's taken me so long to update this page. It's been a whirlwind of activity around here! We have made two trips to Duke University Children's Hospital. Since the January MRI showed increased pressure and an enlarged ventricle, we headed to Duke to have a shunt installed and for further evaluation of Eric's condition and treatment options. It was determined at that time that the shunt wasn't necessary, and Eric had a PET scan and a profusion scan to give us more information about the tumor and the new growth.
We returned home on a Saturday, and Eric's pressure symptoms increased dramatically by Monday. We left again the following Thursday, and Eric had the shunt installed during our second trip. He is doing fairly well, although we seem to have traded in headaches for stomach aches, as the shunt drains the excess fluid into the cavity surrounding his stomach. Hopefully his body will adjust and he will start feeling better soon.
Since Eric's tumor is considered a recurrence, they no longer discuss "cure," but rather, "comfort." Therefore, we have had a difficult time determining which direction to go with further treatment, if any. Eric's prognosis is dismal with our without treatment (12 months), and any treatment at this point is designed only to prolong the inevitable.
We have decided to go with the gamma knife (radiation) surgery and are awating word from his radiation oncologist as to when the procedure will be performed. Simply put, it is a concentrated beam of radiation to the tumor site to hopefully kill as much of it as we can. There are somewhat substantial risks to this type of surgery, but we have determined that the potential benefits outweigh the risk, given his prognosis. We have, at this point, also decided to suspend all chemotherapy. Eric's bone marrow is very sensitive to it and it makes him sicker than it does most people. It has been our goal from the beginning to not treat him to death, but let him, at this point, be free of treatment-related side effects as much as possible so that we can enjoy every minute we have with him.
This is NOT to say that we have given up. We continue to seek alternatives and trials which may benefit him, but NOT AT THE EXPENSE OF THE QUALITY OF HIS LIFE. We weigh carefully all options presented to us and make the best decisions we can. As always, your support is appreciated.
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1/31/01
It is with heavy hearts that we share the results of Eric's latest MRI with you. The tumor is alive and well, and growing. Additionally, Eric has some hydrocephalus (fluid on his brain) which is causing him headaches and tummy aches and just overall sluggishness. He will have surgery to install a shunt to relieve the pressure. We will probably have this done at Duke University Children's Hospital in Durham, NC. We are awiting word from our doctor as to when they can see us, and word from the insurance company on whether they will pay for out-of-state care. He is at home and doing well otherwise. As usual, he maintains his sunny disposition and has a ready smile for everyone. When his blood counts recover, we may try a different type of chemotherapy. He will also be evaluated at Duke for further treatment options. We ask for your support as we strive to maintain the quality of Eric's life, perhaps at the expense of the quantity of it. We will let you know more details as we have them.
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1/20/01
So sorry for the delay in updating this page!
Eric took his new dose of temozolomide much better this time...very little nausea or other problems. However, his counts crashed pretty quickly, and he was in the hospital from the 12th through 17th fighting various infections. He's received several platelet transfusions as well.
He had a spill on his scooter, landing him back in the hospital for observation, and sporting a golf-ball size bruise on his forehead. What next?!
Nurse Mommy gives him daily injections of neupogen to try to boost his white blood cell count (which is below 1), and draws blood to drop at the lab each week. As usual, he faces it all with a smile and great attitude.
His next MRI is scheduled for January 29.
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12/27/00
Eric's MRI in November showed no change from his MRI in August. What does that mean? Who knows! He started another round of chemo this morning, at a 20% increase in dosage from his last round.
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11/20/00
Eric's counts are nearly high enough that we can start another round of chemo. If his doctor is agreeable, we want to wait until after Christmas so he isn't sick during the holidays.
Eric has an MRI scheduled for Wednesday, 11/22/00. We will post the results right here when we have them.
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10/27/00
Another day, another platelet transfusion! Other than his counts remaining very low, his spirits have picked up and he has a little more energy. We continue to go for labs twice a week, and for now things are just status quo until his counts return to a reasonable level.
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10/16/00
Well, we checked Eric out of the hospital (where he received a course of antibiotics and a platelet transfusion) on Thursday at 10:00 a.m., and were on our way camping by 10:30!! He did fine, we had fun, and he's back in school today....now we just wait for his counts to come back up! And we're shooting for Thanksgiving in Connecticut, if the airlines cooperate!
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10/10/00
Eric looks and fees well; however his blood counts are extremely low. We have had to postpone a long-planned trip to Connecticut and may also have to cancel our substitute camping trip! He has had one platelet transfusion and is scheduled for another tomorrow.
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9/27/00
Eric has completed the medication portion of the chemo drug...now we wait patiently for the fallout. Last time he took this drug, he was in the hospital by now, so we are happy that he is overall not doing too badly. In fact, I expect to send him back to school Thursday or Friday! We'll check his counts regularly and repeat the chemo when he is ready, gradually increasing the dose as we go. He has continued on the thalidomide during this time as well, which actually may be helping with nausea and other chemo-related symptoms as well. Keep him in your prayers!
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9/22/00
Eric will start a new round of chemotherapy today at 1/2 the original dose of last January. We will keep you posted on his condition right here!
