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December 2002 Updates
12/30/02 Update
It was an close decision to start Benjamin's seventh round of 2-CdA chemotherapy today. His white blood absolute neutrophil count was only at 864, but it's best if it is over 1000. The decision was made to go ahead and start the treatment. His red blood counts were much improved due to the blood transfusion given last week.We cannot believe this year is coming to an end...it has been a long long year, so much has happened. It is best summed up in the pictures below. On the left is Ben near the time he was diagnosed (5/17/02); you can see his scalp lesions, swollen eye and brain surgery Band-Aid. On the right is Ben today. We feel blessed that little Ben is doing well and has made such an improvement. Ben still has a long way to go to fight this disease, but we are hopeful.
12/25/02 UpdateMerry Christmas!!! We have been hiding our big news until the Grandparents were here so we could surprise them...14 month old Ben has been walking! He motors everywhere. What a fantastic Christmas present! He started last Thursday and just keeps getting better everyday. Click here to see a movie (Quicktime 1.8 MB).
Santa came last night. The kids were so excited!
12/23/02 UpdateAt clinic today we learned that Ben's white blood counts are not high enough to receive chemotherapy. We will have to do it next week and cancel our trip to Tahoe to see the Swanson Grandparents. Ben's red blood count (hemoglobin) was also too low - it has been falling slowly and consistently for many months. Today he finally needed and received a blood transfusion.
Carolyn has been wrestling with strep. She has been on antibiotics a couple of days and is starting to feel a little better.
The grandparents are coming into town for Christmas and there are rumors Santa is coming. We will post pictures if we happen to catch him on film.
Faster, higher! Ben loves to swing...
12/20/02 UpdateWe went to see Dr. Etzl at PCH today to review Ben's scans from Tuesday and plan what to do next.
Scan Review
Bottom line is that the brain, lung and kidney lesions do not look larger. They have changed... the brain lesions are not picking up as much contrast dye. One of the lung lesions looks a little more prominent, the others look the same. The kidney 'lesion' is still difficult to read - they cannot tell if the structure of the kidney is just a little different or if it is actually disease. It would be nice to be able to measure the brain lesions and see if they had changed in size, but the contrast issue prevents this. Even though we are not seeing drastic decreases, keeping progression of this disease at bay should be considered a success. See Dr. Notes for more discussion.Go Forward Plan
The plan is to do two additional rounds of 2-CdA and reassess. This surprised us because the protocol only allows for six rounds - but the six course rule is not as hard and fast as we understood before. Dr. Etzl and Dr. Arceci both agreed we should try to stay with what appears to be working.We will return to clinic this Monday and see if his blood counts are high enough to get chemotherapy this Christmas week.
As for the anti-seizure medication (Phenobarbital), we are probably going to go through these two courses of 2-CdA and then perhaps take him off the medication and see if seizures start back up.
Check out our little Picasso...
12/18/02 UpdateWell, it has been another confusing and emotional day with Ben's MRI and CT scans. Yesterday Ben had his 9th MRI. It is frustrating because every time the process is different. The big issue with this set of scans is that the lesions are not showing up under contrast. At first we were interpreting this as an error (i.e. not waiting long enough between administration of contrast and the scans), but after talking with the pediatric radiologist, uncontrasted tumors may be a good thing. Though we are not 100% convinced, she stated that since the lesions are not picking up contrast as quickly as in the past, they are changing, hopefully for the better. So we have two responses - 1) tumor size and 2) the ability of the tumor to pick up contrast. The problem is that without contrasted tumors, you cannot see the borders of the tumors and they are therefore nearly impossible to measure. The radiologist's opinion is that they were the same size or smaller, but no detailed measurements (as far as I can tell) were taken to state this conclusion.
Here we are at the Rainbow Kids day at the zoo on Saturday. Ben loved the stuffed zoo animals. After much debate, he selected a brightly colored tree frog!
12/17/02 UpdateBen gets his scans today. Here are our current questions and concerns:
Here are the Master Chefs making ginger bread cookies...Have the brain tumors grown, stayed the same size or gotten smaller? We have given Ben the maximum number of allowable courses of 2-CdA (six max.), based on the answer to the above question, what should we do next? Another chemo? Which one? What about his lung lesions?
Stay tuned for results tomorrow. We have a meeting with Dr. Etzl this Friday in which we will review the results and hopefully determine what to do next.
12/15/02 UpdateJust wanted to give preliminary race results. We believe we raised about $50,000 after expenses - our goal was $40,000 - this is fantastic!
12/8/02 UpdateThe race went well. We had fantastic weather. The entire running committee worked really hard. We had about 660 registered runners. We will know how much we raised later this week.
Channel 15 was there and they aired a nice story at 5:30 tonight.
Carolyn (and Ben) ran fast. 27:33 was their time.
12/2/02 UpdateBen started his 6th round of 2CdA today!! He will go in for a 2 hour infusion each day this week (Mon - Fri). We were surprised, but his blood counts were high enough. This is the last round that we will be allowed to give him. After this, we do not know what we will do. His scans are scheduled for December 17, so we will see where he is then.
Ben's run is on Sunday!!! We are scheduled to be on a couple newscasts this coming week about Ben's Run. So, tune in or turn on your VCR recorder. We will be on Channel 3 on Tuesday, Dec. 3 between 4:30 and 6:30 p.m. We will also be on Channel 12 on Thursday, Dec. 5 at approximately 5:45 a.m.
Ben loves the phone, don't be surprised if he calls you soon...Channel 3 (Real Streaming Video 3 MB) Channel 12 (Real Streaming Video 2 MB) Channel 15 (Real Streaming Video 2 MB)
12/1/02 UpdateHappy Thanksgiving! It has been a great week with the family. Everyone was here for the holiday. Carolyn made a wonderful meal! We are incredibly THANKFUL for Ben and for the rest of our family & friends.
There was a little story on Channel 15 news today. They did a nice job. Carolyn & Ben will be on Channel 12, live, on Thursday morning. Ben's Run is getting even bigger! We are so happy to be making a difference. Here is the silent auction catalog - come and bid this Sunday!!
Ben, Marie & Cole (Ben's & Marie's cousin) had a fantastic time hanging out.
Rub a dub dub....
Ben & Cole work on Marie's
Jeep - getting it into tip-top shape...
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