August 2002 Updates
8/29/02 Update
Dr. Etzl and the pediatric neural radiologist had a quick review of the MR scans and confirmed that the lesions had not gotten bigger.  They did not say if they were smaller or not.  Since they are not bigger, and Ben's blood counts are OK we are going to start another two rounds of 2-CdA on Tuesday.

Bottom line is we think that the chemo is working and we are finally headed in the right direction!  We will have another scan in about six weeks to confirm.  We are a little guarded when we say this though, because we though we were doing well before and the following scans reviled larger and more numerous lesions.

Here is another of Bill's birthday presents...

8/27/02 Update

I have spent some time measuring all of the lesions in detail.  I cannot get exact measurements because of the different locations of the image slices from this scan to the last.  The good news is that all my measurements came up smaller than those made on 7/19.  The large lesions are somewhere between 5 and 30 percent smaller by volume (note: there is some substantial measurement error due to the slice location change from scan to scan and due to the difficultly of measuring exact lesion boundaries when the leasions have a strange shape or they are not clear on the scan).  Dr. Etzl is going to be reviewing the scans with the pediatric neural radiologist tomorrow morning.

Dr. Etzl discussed the CT results with us today.  The lung lesions look the same.  The kidney lesions do not appear to be there - we do not know if this is because they went away or if they were just 'contrast artifacts' on the other scans.

Benjamin's neutrophil counts when through the roof from the Neupogen shots.  They are 10 times higher than they normally are.

If all goes well and the pediatric neural radiologist confirms that the lesions are unchanged or smaller we will continue with 2-CdA chemotherapy next week.

8/27/02 Update

The big day is finally here and gone...Ben had his Body CT, Head MR and Skeletal X-Ray Survey today.  We have reviewed the MR scans at home - we are not quite sure of the results.  The brain lesions do not appear to be bigger.  They may be ever-so-slightly smaller.  It is so difficult to tell by comparing to the scans from last month - the sections are not exactly the same.  We did not see the more drastic reduction we were hoping for.  There does not appear to be any new lesions.  We are left with several questions:

We see Dr. Etzl tomorrow to try to get those questions answered.
8/23/02 Update

Looks like the chemo hit Benjamin a little harder this time - his neutrophils have dropped to zero per his count today.  Because this can be dangerous, we are starting to give him Neupogen injections every day at home.  The Neupogen (actually a recombinantly generated Granulocyte Colony Stimulating Factor) kick starts neutrophil production.

We are anxiously awaiting the 27th for Ben's scans.  Check on Wednesday the 28th for some hopefully good news.

A few more words on the United Way - I just really wanted to stress that I feel this effort is extremely important - for Ben and for others like him.  Please consider donating to the HAA through UW or the CFC.

We have decided to hold Marie out of preschool until we can figure out what is happening with Ben.  The school has been very flexible with us - we appreciate their understanding and help.

Ben is 10 months old today..

8/22/02 Update

It is time for the United Way and Combined Federal Campaign!!  We would like to ask everyone to donate, if even a small amount, to the Histiocytosis Association of America through the United Way.  The HAA is doing such critical work to fund research on these diseases.  Click here to find out how to donate at your company.  Please tell your close friends and family as well.  We know it is a little difficult to sign up, but this is a disease that your donations could have a very large impact on!!

Some of our friends (Beth, Rasa, Lynn and others) are starting a fun run.  Click here for more details.

Ben's counts were fine on Tuesday, they are very similar to his counts from right after his first 2-CdA session.  We happily are currently living a simi-uneventful life!!

Ben started climbing the stairs today!  He is like a little monkey.

8/18/02 Update

Bill took a quick trip to Minneapolis Minnesota for the Histiocytosis Association of America's Regional Meeting.  About 25 families attended the Saturday event.  The meeting was similar to the one he attended in April right after we learned Ben had Histiocytosis.  Dr. Joe Neglia from the University of Minnesota gave a comprehensive presentation on LCH.  These meetings are incredibly valuable, and we are thankful to the HAA for holding them.  See Dr. Notes for additional details.

We have been agonizing over what has turned out to be a very difficult decision - send Marie to preschool or not.  We have been going back and forth and still have no clear-cut, easy answer.  We were planning on sending Marie to school before all of this happened, she is excited and very ready.  On the other hand we do not want to expose Ben to additional sources of sickness when his blood counts are low from the chemotherapy.

Ben seemed to breeze through his 2-CdA chemotherapy this past week.  His counts will start dropping over these next two weeks and we will monitor him closely.  We are still looking toward the 27th for the scan results.

Aunt Cheryn and Uncle John came for a visit from San Antonio over the weekend.  Ben has been pulling himself up into a standing position very often.  He is going to be a climber.  When we turn on music, he gets excited and starts bouncing to the beat!  Here is a picture of Ben pulling himself up and a picture of daddy on his birthday...

8/12/02 Update

Ben went to clinic today.  To start his second course of 2-CdA chemo they wanted his absolute neutrophil count to be above 1,000 - it was 891 - close enough, they gave him chemo anyway.  We were glad we did not have to delay.

Benjamin had a picture taken of himself for his daddy's birthday present...

8/11/02 Update

One of Benjamin's scalp lesions has gotten noticeably smaller.  We do not know exactly what this means, but we are interpreting it as a good sign.  We are not sure if the size reduction in the scalp lesions is from the chemo.  Also we do not know if this could be a sign that the brain lesions are getting smaller.

Ben starts his second course of 2-CdA this week, Monday through Friday (if his blood counts are high enough).  He will get his scans August 27th.

Here Little Ben is hanging out with his Papa, Big Ben...

8/6/02 Update

Ben is still very well.  He played peek-a-boo for the first time with his mom yesterday, pulling his towel over his own eyes and then raising it up and laughing.

He woke up Tuesday (8/5) with a rash on his belly, that quickly spread.  By the afternoon he had a bright red, hot to the touch, rash on his stomach, chest, back, neck and some on his legs and arms.  The doctor did not think it was a food allergy (we just introduced corn on Monday) or a contact rash (like due to laundry detergent in clothes).  It is possible that this rash is a reaction to the 2CdA.  He had no fever or discomfort from it.  He just seemed oblivious to it.  By Tuesday evening the rash was completely gone from his stomach, chest and back, but it had "moved" to his forehead, legs and arms.  Then this morning it was gone from those areas and had "moved" to his face.  We have a picture of the rash on his face.  It seems odd for a rash to move around his skin like that.  But now the rash is completely gone.

Ben had his blood counts taken on Tuesday as well.  They are a bit low, but higher than on 8/2.

Current plan is to start the 5 days of 2CdA again on Monday (8/12) as long as his counts come back up.  We will be going to the clinic for a few hours each day for a 2 hour infusion of 2CdA.

Ben is still crawling around everywhere.  He is getting much faster and loves to crawl after his sister or mama.  Here he goes through the tunnel.  He is wearing his "Butt"erfly shirt that he made.

8/2/02 Update

Ben made it through the week OK.  His blood counts are falling, he is neutropenic, but still not at an emergency level.  He did not need a transfusion and he has not had any fevers yet.  We are concerned about this coming week and will be monitoring him closely.  He gets his next week of 2CdA starting August 12th.  Overall, he seems to be feeling well and is crawling up a storm.  He just shoots across the room!  Here are two different movies of him crawling, they are rather large and may take some time to download:

Thank you to our Cousin Cheryl for her generosity and the generosity of her friends!

Papa & Grandma Stokman are here for a couple of weeks.  Grandpa & Grandma Swanson were here over the weekend - Marie & Ben really love their grandparents!  Here is a shot of our blue-eyed boy in deep thought.  What do you think he's contemplating?

www.stokman.com