September 2002 Updates
9/30/02 Update
Ben did not start his 4th round of 2CdA today because his blood counts  were not high enough.  This is not surprising, as last time we had to delay a week as well.  We will check his blood counts again next week (10/7) and hopefully they will be high enough to do the 2CdA then.  The chemotherapy is a daily infusion for 5 days in a row.  The infusion itself is 2 hours, and it takes about 3 1/2 hours total for us in the clinic each day. (Monday - Friday).

Ben is now 11 months and is doing all the typical 11 month old things.  His newest accomplishment is beginning to feed himself food.  He loves peas.  He loves to smash them and move them around on this tray, and yes we do think he does actually eat some of them.

9/27/02 Update

Many people have been asking us what Ben's prognosis is - we wish we knew.  The bottom line is that we do not know, nor can we really know how everything is going to turn out.  There is not enough information or statistics on this disease, and the location and size of Ben's brain lesions are unique from anyone else's.

Here is a quick overview of how Benjamin's chemo has been going:

We did 9 (6+3) weeks of Methotrexate, Vinblastine & Prednisone and the brain lesions seemed to slow at the first scan at six weeks, but at the second they were much larger and there were 8 instead of 4.  Our neurosurgeon was VERY concerned - he expected Ben to start experiencing major symptoms any day.  At that point we started 2-CdA.  He had his first two courses over six weeks and his scalp lesions seemed to subside, but we were not sure if that correlated to brain lesion reduction.  We had the scan and initially we were disappointed - the lesions were still there and at first glance they appeared bigger.  After a detailed analysis, we realized they were all slightly smaller.  We are guarded when we say we are doing well, we will know more in about four weeks.  Ben has started his second two courses of 2-CdA - his blood counts are taking major hits, but we keep plugging away.  He is just as happy as can be.  All the nurses love him because he never fusses.  He seems to be developing normally.
At eleven months Ben has finally started getting two bottom teeth.  He wants to chew on everything.  Grandma Swanson was here to help out this past week while daddy was out of town.  Ben is climbing all over.
9/20/02 Update
Marie was sick this week with some sort of 24 hour flu-type thing.  She is doing better today.  We have tried to keep Ben separated and so far he has not shown signs of being sick.  His blood counts are low, but we did not need a blood transfusion during the Friday visit to clinic - we were worried because his red counts seemed to be very low last time.  His white blood counts are still very low (his ANC is 110, the lowest it has ever been), but they are showing signs of recovery.  With low counts he is at risk for infection - to fight this we are giving him Neupogen.

We are finally spooling up the Ben's Run website.  Go to www.bensrun.com periodically for all the latest information.  If you want to volunteer - either day-of-race or to help in the planning, please let Beth Kozura know at bkozura@cox.net.

Here is Ben with one of his girlfriends, 14 month old Maya.  They had a blast...

9/17/02 Update

Things have been running pretty smoothly, just a little stressful as usual (usual for the last 5 months that is).  Ben had his 2CdA last week.  He went to get blood counts today - they are low.  We are starting him on Neupogen shots for seven days.  After each session of chemo his counts seem to be suppressed more severely and they are suppressed earlier in the cycle.

Ben is cruising like crazy.  He pushes his little teletubbie mower all over - doesn't quite know how to steer yet.  Check out this movie (Quicktime, 645 KB).

Here is a picture of the monkeys and their great grandma - thanks Nana for helping out last week!

9/9/02 Update

Ben started his third round of 2CdA today.  His blood counts are coming back up and his ANC was at 840, which is high enough to get the 2CdA.  He and Carolyn will go into the PCH clinic for a few hours each day this week.  So far he is handling it fine as usual.

Carolyn's grandmother, "Nana", is visiting us this week, so she is helping out with Marie.  Today they painted rainbow fish.

If you are interested in helping out with a run our friends are setting up to help fight Histiocytosis, let us know.  They are doing some incredible work.  Want to know more? Click here to go to the run's planning website.

The faces page has been updated with a little bit of the stories of some wonderful kids that have JXG.  Thanks so much to the parents for sharing them with us.  See the pictures & stories here.

We are asking everyone to donate to the HAA through their United Way work program.  We will be updating the support page with even more detailed steps on how to accomplish this next week, so please check back next week.

Here is our little fireman.  He loves trucks!

9/3/02 Update

Ben's neutrophil white blood counts were too low to start 2-CdA like we expected.  We were very surprised - first time this has happened.  They are going to push back until next week and we will start giving him Neupogen shots for the next three days.

We are going to delay starting Marie in school for about six weeks and then reconsider.

Haven't been to the page in a while?  Make sure you check the August updates.

Here is an old photo, but we like it; Papa Ben, Ben & Marie...

www.stokman.com