July 2002 Updates
7/28/02 UpdateBen crawled for the first time today!!!! We are so happy and proud. He did about three or four little movements forward several different times.
Carolyn has added a guestbook to the website. Please sign in and let us know you are reading along with any of your thoughts.
We had dinner with Syndey's Mother and Aunt, Chris Salem and Darla Salem. Chris was visiting Phoenix from Cleveland. Chris and her sister have been very supportive to us, we cannot thank them enough. As you can see, Ben loves Chris...

7/24/02 Update
Brian Lesions
We met with our neurosurgeon today. He was extremely concerned about the lesions in Ben's brain. To put it shortly - we are running out of time. He is concerned that Benjamin may be experiencing some symptoms, but is, of course, unable to tell us. He was focused on saying that the current chemotherapy has to work, it is our only option. Because of the number, size and location of the lesions, surgery and radiation are not good options - the impact to Ben would be too great. See Dr. Notes for some more details. We worked through the potential impact of each of the tumors (with my naming convention - see images on 7/19 update):A) Yellow - HydrocephalusA month ago we though we were winning this battle, today, this is no longer true.
B1 & B2) Green - Loss of left field of vision
B3) Red - Sunset vision (eyes look down only), ataxia (loss of coordination and motor skills)
C) Pink - Seizure
D) Orange - Cortical lesion near motor strip - loss of motor skill on right side
E & F) Blue & Purple - Developmental lag, trunk ataxia, nystagmus, impaired fine motor reflex, poorly articulated speechLung Lesions
I think I am finally able to read the CT scans for lung lesions. I have added a lung lesion page here.New Chemotherapy (2CdA)
Ben has tolerated the first two days of his new chemotherapy, Cladribine or 2CdA, well. He seems a little nauseous, but Carolyn gives him Zofran and that takes care of it. We are worried about his blood counts dropping next week and the week after.Ben is eating a ton of baby food (sweet potatoes, carrots, peas & squash). Hopefully his appetite keeps up. He has not started crawling yet, be he is very close. Benjamin turned 9 months old yesterday.

7/22/02 UpdateWe went to clinic today to review our go forward plan with Dr. Etzl (see Dr. Notes). He was in agreement that we needed to try something else, we were not making inroads with the Vinblastine, Prednisone & Methotrexate. We decided to try two courses of 2CdA and re-evaluate in six weeks. Carolyn will start taking Ben to clinic for the next five days for two hours of chemo each day and repeat this a second time in three weeks.
In addition to the new brain lesions, Ben has a new lesion in his right lung. The kidney lesion is still visible.
It feels like a roller coaster almost every day. A month ago, we thought we were stopping the lesions. Friday we were very depressed about the scan results. Today we are feeling up because we are going to try something else and we are hopeful. We have no idea what tomorrow brings.
Ben loves his tractor...

7/21/02 UpdateIf my calculations are correct, the lesions have grown between 11 and 16% since a month ago (colors match pictures from 7/19/02 update):
A) Yellow ~ 12%Conclusion: The main large lesions are growing at a rate of about 10% per month.
B1) Mint Green ~ 16%
B2) Bright Green ~ 15%
C) Pink ~ 11%The smaller lesions were just barely visible on the last scans (in hindsight), so their percentage growth is much greater and probably not accurate:
B3) Red ~ 345%We are also concerned that there could be yet another lesion in his occipital lobe just above the cerebellum. I need to work to complete these calculations for the other four scans as well, but it is very time consuming.
D) Orange ~ 205%
E) Blue ~ 29%
F) Purple ~ 64%
7/19/02 UpdateThe Scans - First Review:
We had Ben's sixth MR today. We were disappointed with the results. We were hoping to see lesions that were the same size, but instead they look slightly bigger. More disturbing was the fact that there are three 'new' lesions. This brings the total to eight visible lesions. I have artificially colored the lesions for easy viewing and discussion.One new lesion is at the very top of his brain toward the front (see image with orange highlight). In hindsight, you can look back at his scans from last month and see the same lesion, but it was very faint.
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The other new lesion is at the base of his brain in the cerebellum - he now has two in his cerebellum (see image with blue and purple highlight). In hindsight, you can look back at his scans from last month and see the same lesions - but they were smaller and not as pronounced - if you did not know they were there, you would not think they were lesions.
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The third new lesion (red) may be and extension of an existing lesion (highlighted in mint green), but is in a new area of the brain (update on 7/24/02 - new lesion, not an extension). You can also see the bright green lesion. Note: We are concerned that Ben has another lesion toward the bottom center of the left picture - the bright white area (update on 7/24/02 - not a lesion).
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Below are the big three lesions we have been focusing on. I believe the light green and the dark green lesions are actually separate lesions, contrary to what we though in the past. The pink lesion is in his right temporal lobe. The yellow lesion is the large one that could eventually cause hydrocephalus.
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Ben also had a body CT. We do not have those results yet.The Decision:
On Monday, with the help of Dr. Arceci (Johns Hopkins) and Dr. Etzl (PCH), we will be trying to decide what to do next. We can stay on the same chemo, or move to another chemo. Here are the options:
- Stay on the same chemo - Prednisone, Vinblastine & Methotrexate
- Pro: More mild than the other choices, less severe side effects. An acceptable path would be to keep the lesions at bay for several years until they started to recess on their own.
- Con: May not be aggressive enough, might not halt the growth of the lesions.
- Con: Staying on chemo for the long term may have some developmental impacts.
- Etoposide (VP-16) plus Dexamethasone (Decadron)
- Pro: More aggressive chemo, may stop growth, stop formation of new lesions or reduce size of lesions.
- Con: Risk - Can lead to fatal secondary leukemias.
- 2CdA
- Pro: More aggressive chemo, may stop growth, stop formation of new lesions or reduce size of lesions.
- Con: Risk - Can knock out the immune system quickly (hits the bone marrow), any infection can become deadly.
- Con: New chemo, no or little experience administering it at PCH.
7/12/02 Update
We are back home. We were released from the hospital yesterday evening. It took a little longer than usual for Ben's Methotrexate levels to drop to acceptable levels. Marie comes back home on Monday with Grandma Stokman. Ben is excited about having his big sister to play with!Ben has a little runny nose this morning. His counts are low, but no fever yet. Keep our fingers crossed. We go into clinic on Monday for a Vinblastine treatment. On Friday we go in for scans (MRI and CAT scan).
Here is Mama and Benjamin in the PCH playroom. Ben stood and played the piano for a very long time!
7/10/02 UpdateAll is going well in the hospital. Ben seems to be gaining a little weight. He is moving from a laying position into a crawling position. It looks like he may start crawling any day. We are eager for next week, Ben gets his scans again on the 19th, from that point we will decide to either stay on the current chemo or go to 2CdA or Etoposide (VP16).
Here is another group of lake pictures. You can see Ben's Cousin Cole in the orange hat. Little Ben is enjoying the swing at the beach. Daddy also carved Ben's initials in the tree next to our cottage. If you look closely, you can see Cole's initials (CJA 2001) and Marie's initials (MAS 2000). Daddy, Aunt Wendy and all their cousins carved their initials in this same tree over 20 years ago. Little Marie is swimming in her 'sunshine yellow' life jacket with the dogs and Uncle Neal.

7/9/02 UpdateWell, we are back in the hospital for Benjamin's fifth Methotrexate (and Vinblastine) treatment. This is our fourth four day stay at the new hospital, we are regulars now! All seems to be going well.
The big news with Ben is that he is finally eating baby food. He looooves his sweet potatoes. He traveled well on the trip - he is such a good baby!
We returned from our three day trip to Indiana/Michigan and basically went straight to clinic. The trip was great and we are thankful we were able to visit.. For a few moments we felt normal, and it was wonderful to see everyone. Ben played with his one year old cousin, Cole. Little Marie has been swimming all the time. Yesterday she 'drove' the deck boat! Daddy took her out on the paddle boat and wave runner - she loved that. She also picked strawberries and green onions from the garden. The kids had a fourth of July parade around the island. Marie loved the fireworks, Ben took them in as well. Marie had a ton of fun with her friend Megann (Daughter of Bill's friend). Here are some shots of the fun...

7/1/02 UpdateJust returned from clinic and everything went well - Ben got his Vinblastine just fine. We were a little worried that Ben would have to get a blood transfusion before we went in. His hemoglobin was low last Thursday, but all was well. His counts were back up. We were veryhappy that Ben did not need a transfusion!
Dr. Etzl gave us the OK to try to go to Indiana for a few days. We are going to try to go from Wednesday to Sunday if Ben stays well. It will be wonderful to see Marie.
Here are some shots from last week of Ben & Marie making Papa Stokman's Birthday Carrot Cake. They are amazing cooks. I think it is their method of taste testing everything first, it has to be just right...