This page contains updates about Ben and his family. If this is the first time you have been here, you may want to start at the bottom and read chronologically.
This page contains updates about Ben and his family. If this is the first time you have been here, you may want to start at the bottom and read chronologically.
Ben's Run 2003 was a success! We had a ton of fun!
There were 475 runners & walkers. The event raised about $50,000!!!
June 2005 Updates
6/1/05 UpdateWe are exactly where we want to be! We had an appointment with Dr. Etzl today that we only dreamed about 2 and 3 years ago. Ben had fantastic scan results. Ben's brain lesions look great - there is some 'scaring' but things look smaller and better. The one fluid filled void is still there. Some of the lesions are showing and will probably be there for years to come but there is nothing new and nothing growing! Wonderful!
Ben also had very good test results for blood counts, liver and kidney function. This is a very positive thing with all the chemo he had.
It feels so fantastic to write these words. We told him we were so proud of him and that he did so well at the doctor - he was probably thinking 'I did not do anything different' but he smiles with us just the same.
Our next checkup will be in about six months at the beginning of 2006.
Here are some shots of the kids at sea world in San Antonio last month...
May 2005 Updates
5/27/05 UpdateBen had his long-awaited MRI scan of his brain today. This is MRI brain scan number 19. His last scan was over six moths ago - a long time for us. His last chemo was over a year ago!
Ben did fantastically well. Carolyn and Marie practiced putting the sleeping mask on him this weekend so he would not be surprised. He then taught daddy how to do it. It smells like 'cherry' as Ben will tell you. He waited very patiently and he did no complain when they took the IV out. We are very proud of him.
We will not meet with our doctor until next week so we are currently unsure of the outcome, but for a first glance at the CD images all looks good. The 'black void' (see 8/16/04 below) appears to remain. We did not see much contrast or any new entities - which are very good things. We will post what the doctor says.
Here are Ben and Marie just before their first kids run. This was at the Phoenix Zoo and it was a fun kids event.
April 2005 Updates
4/6/05 UpdateWe have been getting positive comments like "no updates on the website - that's good news!". We are happy to say things seems to be going well.
Ben & Carolyn were invited to Phoenix Children's Hospital for a 15 year celebration for the Emily Center. The Emily Center is a family oriented medical library which, as you can imagine, we made great use of. We are very thankful for there existence. We were able to get advanced medical articles free of charge that would not have been available to us otherwise. The center was a key piece of Ben's treatment and one of the reasons he is doing so well today.
Ben was invited to release the doves and appeared in two newspaper articles and on TV. We were happy to be part of such a great event. Carolyn was grateful to meet Emily's Mother.
Here are the links to the articles:
On the wings of doves by Ty Young, The Arizona Republic, Apr. 6, 2005
Emily Center marks 15 years of medical enlightenment by Ty Young, The Arizona Republic, Apr. 6, 2005
January 2005 Updates
1/3/05 UpdateHappy New Year! -and happily no major updates to report. Ben's port surgery area is healing fine. We just wanted to share some pictures...
Ben skiing & riding his new scooter
In front of Grandma's Christmas tree...
Ben as a sledding laughing maniac!
Fresh Snow @ Grandpa & Grandma's Backyard near Lake Tahoe / Carson City
Marie & Ben on Grandpa's Bike...
December 2004 Updates
12/9/04 UpdateMILESTONE: Ben had his port removed!! The surgery went well on Monday. He was such a good boy with no complaints - we are so proud of him! Today he took his port to school and they celebrated with cookies. He was so proud... showing people the port and saying 'This is my port. I had it taken out'. His language is developing fantastically.
Thanksgiving was a blast. We had 18 people over for dinner - even two family members from the Netherlands (Jan & Ellen). The kids loved it. Ben & Marie really really enjoyed playing with their cousins Cole & Will.
We also took a few day trip to San Diego. Ben and Marie thought the waves and sand were the best! We had fun outrunning the waves...
November 2004 Updates
11/17/04 UpdateWe just received even more good news about Ben. We met with Dr. Etzl today to discuss the results of his MRI scan on Monday. His scan on Monday was "stable", with no new tumors and none of the existing ones growing. This means his scans have been stable for one year!!!
Since he has been stable for sometime, we will lengthen the time between scans now until about 6 months.
Also, Dr. Etzl suggested we should have his port removed. Since he is not on treatment and needing regular blood counts and IV medication it is time to get the port out. There is always a risk of infection with the port and the advantages of having the port need to outweigh the risks. Since Ben now does not need to use the port as much, it is more advantageous to have it out. Especially since Ben is in preschool now and we are coming into the winter season. As you remember, any fever that Ben gets requires us to go into the hospital because it could be due to an infection in the port! The port also requires monthly maintenance (flushing) if you don't use it, which we have had to do because we use it so infrequently.
We will have the port removal surgery as soon as possible. It is a one day, out-patient procedure. After that, we wait for 6 months for the next scan. That means no more doctor visits for 1/2 a year! Can you believe it?
11/15/04 UpdateBen had his 18th MRI brain scan today. All went well. Carolyn said the anesthesiologist was excellent. He talked Ben through all the knobs, buttons and settings - and Ben loves buttons, knobs and wires! We have a doctors appointment on Wednesday to talk through the results. It his been three months since the last scan - scans are a big deal; they are our only real window into what is happening.
Ben & Marie went on a hike with their backpacks this weekend. They have magnifying glasses, binoculars and a compass. Here is Ben pointing out a bird to Marie.
11/1/04 UpdateI have had many kind people ask about Ben's Run. We are slightly in limbo right now. I am having a very hard time with, in good faith, asking all our wonderful friends and all the families to give so much again. Everyone put so much into it the last two years, they really need a break. So for now, Ben's Run is on hold - maybe something in the first half of next year? Thanks so much for everyone's interest!
Today was Ben's first day of preschool. Mama has been working very hard to get him toilet trained for this. He just went in and acted like he belonged. Marie enjoyed having him there and he was EXTREMELY excited at the end of this three hours.
October 2004 Updates
10/31/04 UpdateFor Halloween, Marie was Beauty and Ben was the Beast! They were so cute. Ben was unbelievable at the doors saying 'Trick or Treat", "Thankyooou" and " HapppyHalloweeeen". I will probably remember how excited Ben was for the remainder of my days! Here they are with mama the Fairy Godmother.
10/23/04 UpdateBen has turned 3 and Marie has turned 5. I remember hoping so strongly - and saying it to several people - 'if we can just get him to 3 OK, we will be through the hard part'. We were very happy to see his birthday this year. The kids got to pick our their own cake flavors and styles. Marie selected a princess castle with strawberry filling and vanilla cake. Ben selected a monster truck (truck with monsters in it!) made of chocolate.
We had beautiful weather and a great party.
September 2004 Updates
9/18/04 UpdateWe threw a little party to celebrate Ben's progress. What fun! Thanks, everyone, for coming and making it such a special day. Ben and Marie both played like crazy. Everyone had lots of ice cream and many people went swimming.
Ben went to the hospital this week to get his port flushed - maintenance - that is about it.
The wild little man is progressing nicely. Last Friday he had a speech test. He scored a 98 and 100 is average! We were very happy about that. He only has one more speech therapy session. Also, he is starting to be potty trained. He is making good progress this week. He has been spending some time in Marie's school - getting used to being with other kids and away from mama. He is doing great... he goes up to the other kids and asks if they will play with him.
Here are the kids on a windy day on the trail near out house. We call the hill 'sunset mountain'.
August 2004 Updates
8/18/04 Update
Great news!! The meeting with our Doctor was very positive! He said the lesions looked either the same or appeared to show less contrast! We are thinking about throwing a party. Our plan is to take another three month break and then scan again. Yeah! No chemotherapy, no radiation.
Here is a little more detail of what our doctor talked about: The scans looked good - they looked better than he thought accounting for the fact that he was off treatment for over three months. The main lesion we were concerned with from last time is either the same size or smaller. This lesion enhances less (not showing as much contrast or absorbing as much contrast). The dark fluid filled cyst is still there and the same size (see the 8/16/04 image below for dark spot). The radiologist is not seeing anything else in the brain (there is one imaging artifact, but we are not concerned with this). They can still see a shadow of the large lesion that is in the ventricles, but it is not enhancing and not blocking the ventricles. His current thought is that perhaps, like other cases with this disease, it is burning itself out. Ben's blood counts are now normal, his immune system is not low!
Here is Ben modeling his Operation Iraqi Freedom hat. His Aunt Cheryn and Uncle John have been over there since January and sent the kids hats, among other things. We are thinking about them and hope they continue to stay safe.
8/16/04 UpdateBen had his 17th MRI brain scan today (not counting the PET scan). He handled it like a pro. No screaming or crying. It was also Marie's first full day of kindergarten. She did well also!
We have looked at the scan images. In our non-professional opinion, the lesion of concern looks the same or better. We also do not see anything new. We need to always back those kind of statements up with the caveats... from scan-to-scan there are difference in where the 'slices' are taken and you end up seeing slightly different aspects of the lesion - so we could just be seeing it from a better angle. We have an appointment on Monday with the doctor - we will let you know what we learn from that.
Here are some comparison images. Look to the areas near the yellow arrow head (actually to the left of the arrow head, not directly under). The left are images from 5/24/04 on the right are images from today.
Notice how the dark area
is not as pronounced.
8/5/04 UpdateTime has been absolutely flying. Ben has been on a 'chemo break' for a little over two months now. All seems well. Ben's next scan is August 16th. Everyone - cross your fingers!
We moved into a new house so life has been busy (you can tell from the lack of updates). Here is a shot of the kids in their new front yard - a larger yard was one of the main reasons we wanted to move. We also really wanted to be on a cul-de-sac low traffic area. We now have a swing set in the backyard and Ben loves it. Expect some pictures of him on the swing soon!
July 2004 Updates
7/4/04 UpdateFourth of July - everything is going well in Michigan! Ben and Marie are both little fish in the lake. They love being with the family. Both Marie & Ben are spending the entire month of July in the midwest. Here is Ben doing his favorite water activity - pulling rocks out of the water and then tossing them back in...
June 2004 Updates
6/1/04 UpdateWe met with our doctor today. After lengthy discussion we have decided to wait for 2 or 3 months and then scan again. We could continue with chemo, but we are concerned with toxicity. We could try another chemo but there are no fantastic choices. We could start radiation, but we are currently uncertain how fast the tumor of concern is growing.
So we are going to monitor with another MRI after a few months and see if there is any growth. We are hopeful that there will not be. It is very confusing, we are not sure what is the best thing to do... if you give more chemo or radiation you are concerned with how you are harming him long term. If you wait, you are concerned the lesion will grow and damage him. Right now we are strongly leaning toward the wait-and-see approach because he has gone through so much chemo for so long.
Ben really looks up to his big sister. They are so loving toward each other. He copies EVERYTHING she does. At night she tucks him in and gives him a big kiss. We know they will not get along this well forever, so we are savoring it every day.
May 2004 Updates
5/28/04 UpdateWe have been wrestling with the scan results. They have not turned out as well as we had hoped. Everything looks good except for one lesion in his brain. It appears that one of his 'newer' lesions has gone away per the last scan on 3/22/04 and then returned on this scan. In my humble opinion, this could be several things...
Per the series of images below you can see the progression of the lesion in question. Look to the left center of each image for the light spot (and dark area). You can see the back of his ear in some of the images. These images are all vertical slices of the right half of his brain (MRI images are reversed). In the first of the seven images the lesion is not present. In the PET scan (color) image we see it for the first time. Then we see it growing in the next three images. In the second to the last image all we see is a dark spot - the light area is no longer visible. In the last (current) image we see the white spot 'reappear'.
- We did not see the lesion in the last scan because of where the slice was cut or how the lesion did or did not contrast
- It is at a different stage in its 'life cycle' and contrasts differently, but is not growing
- It actually did get better and now that we have stopped chemo it has come back and/or grown
We are currently not sure what we are going to do. More chemo is not a good option for many reasons - he has had so much he will see toxicity effects shortly. Etoposide - a chemo he has not tried - has some nasty secondary cancer associations and is not turning out to be as effective as they have thought in the past. Also if we choose chemotherapy it has to be one of the relatively few that cross the blood brain barrier. This leaves us with no strong chemo drug candidates.Our doctor is leaning toward radiation, possibly focused low dosage radiation (called IMRT). He is considering radiation because this is a single lesion, it is toward the outside of the brain and Ben is older now and therefore better able to handle it.
We meet with our doctor on Tuesday for further discussion.
5/21/04 UpdateBen will have scans on Monday, 5/24/04. We have been enjoying a 3 week break from chemo and clinic visits. We have been doing lots of activities and swimming a lot. Ben loves to splash in the water and play with his watering can.
Ben has stepped into a whole new phase. Lately he loves books. Before we could not keep him focused on one, now he will sit for a long period and read with Mama. He gets very excited about it! He loves to go to the library and borrow different books.
5/4/04 UpdateBen went through chemo last week quite well. He was very tired following (as usual) but is doing well this week. Bill was traveling for work this week so Grandma Stokman came out from Indiana for the night shift in the hospital. What would we do without the Grandma's??
This could POSSIBLY be Ben's last week of chemo. The nurses even made Ben a poster at the hospital to wish him luck and farewell. We will get a scan next month and if all is good it will be all of our dreams come true! We cannot help but feel reserved and will hold our celebration until then, but hopefully we will look back and realize how good a week it really is.
Ben's blood counts look good. We do not have to go into clinic for three weeks. That will be an unusually long gap for Carolyn and she is happy.
We wanted to extend a special thanks to The Wiggles!! The Wiggles are one of Ben's favorites. When they heard that Ben could not make it to their Phoenix show, they actually sent Ben a basket at the Hospital. It had some stuffed figures (Wags the Dog, Henry the Octopus and Dorothy the Dinosaur) and some DVD's and CD!
We love Sweet Tomatoes (if you have never gone, we strongly recommend it). Phoenix Children's Hospital is having a fundraiser to benefit the Children's Cancer Center (Where Ben has been treated for the last 2 years). It is a fundraiser where you go to Sweet Tomatoes restaurant and the restaurant donates 20% of your bill to the hospital. Sweet Tomatoes is a salad buffet restaurant. It is really good/healthy and they have lots of stuff for kids...Ben & Marie love it. The fundraiser runs from May 1 - May 8. If you go, print out and bring the flyer (download here). You must present the flyer for the hospital to get the donation. Please don't feel obligated to go, but if you happen to be going out to eat in the next week or you go to Sweet Tomatoes anyway, this is the week to go! Benjamin is doing so well. We feel so lucky right now and we are thankful to the cancer center for helping Ben. Don't forget the flyer!
Ben loves swinging on the tree swing and sitting up in the tree in our front yard. He thinks he is such a big shot...
April 2004 Updates
4/15/04 UpdateIt looks as if the web forwarding company that forwards www.stokman.com to members.cox.net/stokman1 dropped the ball. This page has been down for 2 weeks, but now it is fixed. Sorry.
Ben is doing stellar. Since the last entry he has been TALKING so much! One day he just started mumbling and then over the next week it turned into speech. You have to 'interpret' some things, but he is progressing fantastically! It has been night and day in just a few weeks. He actually counts to 10 and will repeat almost anything you preface with 'say...'.
We have our next chemo on the week of 4/26. We will keep our fingers crossed that we are nearing the end of chemo, but we do not know this yet. It is interesting to read the log from two years ago (we were a week into the hospital at this point) and reflect on what Ben has been through and where he is now.
We actually took the kids up to Carson City and Lake Tahoe to Carolyn's Parents for Easter. The weather was fantastic and both Ben and Marie Snow Skied. Marie went to several days of ski school and is turning fantastically! The last picture is of them hunting easter eggs in their Grandparents backyard...
4/2/04 UpdateWe are out of the hospital after a pretty standard week of chemo.
Ben had a reaction to his dressing they put over his access port (where his chemo and other fluids go in). He has been having a rash each time, and it his been getting worse and worse. This time it was especially enflamed and inched him badly. He was on Benadryl for several days and we switched the brand of dressing away from Primapore. He is now getting hydrocortisone applied to the area and it is getting slowly better. You can still completely see the large area where the dressing was attached - especially where it was stuck to his skin.
Ben usually gets a pretty bad diaper rash during chemo weeks. We stay on top of it with barriers and ointments, but this time he also had a bout of constipation - poor guy. We ended up giving him Senacot. After his battle with constipation he then got worse diaper rash. He is slowly healing from that as well.
Bill went to the Netherlands for a four day weekend for a family reunion (which he absolutely loved!), so Grandma Swanson came and helped out on Monday and Tuesday. Thanks Grandma!! Carolyn could not have made it through the beginning of the week (and chemo) without her.
Last week on Friday and Saturday - while Bill was out of town - Ben, Marie, Mama, Beth, Dennis and Jeremy went to Lego Land, Sea World and the beach in San Diego. They had fantastic fun. This picture is amazing because they were all looking at the camera!!...
March 2004 Updates
3/23/04 UpdateGREAT NEWS - BEST YET! Ben had an MRI scan of his head yesterday. We have not had one since November - our longest interval between scans so far. His doctor just called and reviewed the results with us. Here is what we know so far:
We are probably going to have two more courses of chemo starting next week. We are waiting on the doctors to discuss that.
- On the enhanced scans nothing is enhancing! Contrast is not having an effect. This could mean that the lesions are not as active. He called this a 'marked improvement'. They look dramatically different!
- The uncontrasted images (images taken before contrast is administered) still shows the main lesion (we call it the 'yellow' lesion) in the corpus Callosum. It appears unchanged in size. But the good news is that it is not enhancing now!
- In the 'new' area - the area in the right occipital lobe - the swelling around the lesion has gone and the lesions are not enhancing!
- The right temporal and occipital lobe lesions do not even appear - they cannot be seen enhanced or not. This does not mean they are gone, but things definitely look better.
Our heads are still swirling. We will have to let this sink in.
Ben and Marie made this tunnel for their train...
3/12/04 UpdateBen was sick after getting out of the hospital on Thursday night last week. We think he picked up a bug because Carolyn was sick for a few days as well.
Ben's counts at clinic today were very good. His ANC was 2585. Dr. Etzl feels that he is finally recovering from the 2CdA. We have not even given him any neupogen shots this time. It would be nice to be free of those. We are going in next week to check counts again. He lost 3 pounds since checking into the hospital last Monday, so now Marie is heavier than him again (31.5 Ben and 33.3 Marie). He really hasn't eaten for a week. He did eat a lot of pasta last night. But not much lunch today, he seemed too tired to eat.
Here he is in the hospital enjoying his lunch.
3/2/04 UpdateWell, it is official. Two-year-and-four-month old Ben weighs more than his big sister who is almost exactly two years older! That is great news...he is still growing in spite of all the chemo. Ben weighed in at 33.4 pounds yesterday and Marie weighs in at 33 pounds.
Ben started his week at the hospital yesterday. All is going smoothly. He began his methotrexate chemotherapy at 6:00 PM last night. Hopefully we will exit the hospital on Thursday or Friday.
Ben was so cute last night. When I arrived at the hospital (Bill), he was hanging out with the nurses at the nurses station. He was playing with the first aid tape and was having a ball. One of his nurses than wanted to take his blood pressure and his temp... it is amazing to see how much of a pro he is!! I watched in awe as he helped put his blood pressure cuff around his arm, plug the air tubes from the BP machine into the cuff and hold his arm out. With his other hand he then turns on the machine via the power button and right after that selects the correct button to kick the whole process off. He did all this with such a big proud confident smile. I wish I would have had the video camera.
This is his last Methotrexate (this week is course #6) before we get MRI scans in a couple of weeks. We are eager for the results of these scans because this is the longest we have gone over the last two years without a scan. Our last MRI was Thanksgiving week - it has been a four month gap. Keep your fingers crossed that everything has been headed in the right direction!
Ben's white blood cell counts are finally up a little. The methotrexate is not suppose to impact bone marrow and blood counts, but we continue to see low counts with Ben. The doctor believe this is still a residual impact of the 2-CdA. Hopefully Ben is finally clearing the impact of the 2-CdA (which we stopped about 6 months ago).
Below are Ben, Marie & Carolyn at the under-the-sea class at the zoo. They were each able to hold and pet one sea creature. Marie held the chocolate chip starfish and Ben held the sea urchin.
February 2004 Updates
2/11/04 UpdateBen was pretty tired all weekend. He fell asleep on the floor in the middle of playing Sunday afternoon and then again at dinner, so he went to bed early. On Monday we went in to clinic to check his counts. His counts were a little low, and given his apparent exhaustion, they decided to give him a blood transfusion. He also had a bit of a fever of 100.0 all day Monday. This is the second blood transfusion he's had since treatment began nearly 2 years ago.
By Tuesday his fever was gone and he was feeling much better. In fact he is sleeping now LESS than normal. The good blood gives him a little boost. He also has a nice pink coloring to his skin now.
He is getting neupogen shots daily now until Thursday. We will check his counts again in clinic on Friday. Then we will have a little break until the next couse of chemotherapy in about 3 weeks.
2/8/04 UpdateBen was released from the hospital late Thursday night. Over the weekend he has been extremely tired. He gets up, eats and says "up bed" - pretty much napping the entire day.
2/2/04 UpdateBen will be in the hospital this week for Methotrexate #5. We checked his counts today in the clinic and his ANC was 598 and his platelets were over 100. Because Ben's white blood cell count goes up and down, we have relaxed the ANC 750 requirement and are going ahead with chemo (as we did last time too). They started the chemo at around 9:30 tonight. We will be in the hospital all week. If all goes well and routine, we may be out by Thursday night, but we could be there as long as Sunday. After this we have one more methotrexate dose before we do scans.
Ben is talking more and more. He uses "sounds" to describe things. For example, he calls a car a "beep beep" and he calls a monkey "ooh aah aah". He also says all day long "I play choo choo" because he still loves his train table from Christmas. And of course the typical 2 year toddler phrases, "I will do" and "I will hold". His new word this week is outside, which sounds like "out-bide".
January 2004 Updates
1/19/04 UpdateWell, Ben got out of the hospital on Thursday (1/9/04) again - nice to get out sooner than later. He did well throughout the week. It is the week after that he is really down-and-out. He will get up, eat and then proceed to point upstairs and say 'UP BED UP BED'. He takes two long naps on his really down days. A special thanks to Pat for coming to the hospital for an evening and watching Ben - we went out and celebrated Carolyn's birthday.
This week he is bruising very very easily. His legs look horrible. Bruising is a tell-tail sign of low platelets. Other than that he is in good sprits. Ben mimics everything his sister does, right down to laughing while watching something when she does.
Carolyn ran the first Phoenix Rock-n-Roll Marathon (her sixth). She was not super happy with her time. Check out this picture.
1/6/04 UpdateBen started saying 'yes' today! He had been saying 'un-hun' and 'yepa'. Last week he said 'I-want-a-whole-one' when we were having pancakes for breakfast.
He received his chemo and now they monitor his blood levels for the drug and they administer a Leucovorin Rescue to stop the ill effects of the chemo. Hopefully we will get out Thursday or Friday night. It depends on how quickly his levels subside. We will be putting him on Neupogen shots for 10 days after he is out of the hospital to pump up his white blood cell counts and prevent infection in the short term.
1/5/04 UpdateWe are now getting chemo even with low blood counts. This is a very confusing on-again/off-again time! The methotrexate is not suppose to harm his counts, so they are starting it at 9:00 PM tonight.
1/3/04 UpdateIn the hospital again. Ben spiked a fever so we went directly to be admitted to PCH (Late Saturday night). He is starting to receive antibiotics. It could be any old infection that would not bother you or I - his white blood counts are so low that almost anything can get to him even normal germs in his own body.
Aunt Betty mailed Ben and Marie this fantastic G-scale train all the way from Pittsburgh for Christmas!! The kids have spent hours commanding the train to stop and go. It even makes realistic train sounds. Ben loves his 'dChoo-Choos'. Daddy and Ben went to the Carson City train museum and he just yelled Cho-Cho in excitement all day. The kids also got a nice little wood train set from Santa.
December 2003 Updates
12/29/03 UpdateCarolyn went to the clinic today to start getting Ben checked in for a week of chemo. She ended up coming home with him after a few hours. His white blood counts are low so they decided to give him a break from the chemo. They think it is probably still caused by the 2CdA, which he has been off of since August. The methotrexate is not suppose to attack his bone marrow.
Ben and Marie made this ginger bread house with Grandma Swanson. Ben was so proud, when we came back from skiing, it was the first thing he proudly showed us!
12/21/03 UpdateBen actually went skiing for the first time today! He really enjoyed it. Not sure if he realizes what it is, but we sure loved seeing the smile on his face. He went up the lifts and skied down with mama holding him. Marie enjoyed several ski classes.
12/3/03 UpdateBen is not feeling so well. We believe it is due to the Methotrexate chemotherapy. He does not have a fever, but he threw up at two separate times today quite violently. He is not eating and his mood is down. He is now on two anti-nausa medications, instead of the standard one. We will see if that helps.
Here is the family at the Rainbow Kids Christmas Zoo Celebration. Ben sat on Santa's lap. Marie had her face painted with a Tweety bird.
12/1/03 UpdateGREAT NEWS!! We met with doctor Etzl today to review Ben's latest scans. The results look positive! Turns out we have a lot to be thankful for on this just-past-thanksgiving!
We are going in the hospital this week for chemo. We will do this at least four more times (including this time, over the next 16 weeks). Then we will scan again. No relatives this week and we cannot bring Marie to the hospital so it will shape up to be a difficult weekend. We will continue to rely on our friends and neighbors.
So why are we so excited about the scan results? No lesions appear to be larger in Ben's brain!! Plus the lung nodules are no longer appreciated (seen) - even the new 4 mm one!
Here is a summary of the report:
- I have color coded the text (Green is gone, Yellow/Orange is smaller, Red is no difference).
- I have added some comments in parenthesis (i.e. comment)
- I have also attached pictures from the old scans to help you understand what lesions the report is referring to [denoted by brackets].
- Anterior is forward, posterior is back
Left cerebellar hemisphere are no longer identified (no longer visible) [see image with purple lesion]
Note: this is not a current
image, but an old image for explanatory reference.
Right thalamus show no evidence of contrast enhancement and no change in size (no difference) [see images with red and green lesions below]Anterior is somewhat smaller [see image with mint green lesion] Middle one is somewhat smaller [see image with red lesion] Posterior horn appears to have resolved (no longer visible) [see image with bright green lesion]
Left side of the corpus callosum is unchanged (no difference) [see image with yellow lesion below]
and
A small enhancing lesion in the anterior portion of the right temporal lobe is appreciated (still visible) [see image with pink lesion below]
Right occipital lobe [The series of images with red arrows]:Anterior lesion enhanced with contrast, others did not (???) Anterior lesion is unchanged (no difference) posterior lesion is resolved (no longer visible) Middle lesion to be decreased in size (smaller)
Note: this is not a current
image, but an old image for explanatory reference.
November 2003 Updates
11/24/03 UpdateBen had scans today (MRI of his head, CT of his body). We get the results next Monday - a week from today
11/22/03 UpdateThe big day, Ben's Run 2003, has finally come and gone. The team put so much work into the event this year. With the exceptions of things outside our control (the cold temperature and the wind) things went flawlessly. We are lucky to be part of such a professional effort for such and import cause. THANKS EVERYONE! An extra extra special thanks to BETH! And a extra special thanks to Tammy, Suzanne, Dennis, Joe, Rasa, Lynn, Tanya, Sharon and Jen. They worked their tails off! All amazing people we love very much. We had about 100 volunteers on race day - thank you for giving your time. Also thanks too all the sponsors who donated so much. Check it all out at www.bensrun.com. Pictures will be coming soon.
11/13/03 UpdateWe are all glad to be home from the hospital. Papa stayed here through the weekend, so we all had fun relaxing at home.
Ben's blood counts are low this week. Normally with the Methotrexate, his counts should not be affected because of the cell rescue that is done along with it. But, it is possible his bone marrow is still sensitive from the 2CdA he had previously or he could have had a virus. He is his usual happy self. We will go into clinic again next week to check his counts again.
Here are Papa and Ben doing some much needed home repairs over the weekend. Papa went home to Indiana on Tuesday.
11/7/03 UpdateBen did well with the chemotherapy in the hospital this week. We actually got out of the hospital last night (Thursday), which is the earliest yet.
Here is a picture of Benjamin with Papa in Ben's hospital room at PCH.
11/06/03 UpdateBen has been doing OK. He is much more tired than normal, but he keeps his good sprits. We are very thankful that Grandpa Ben flew in from Indiana to help out. It is always better when one of the grandparents is here. It is easier on little Marie as well. Thanks to Sharon & Dara's church for meals!
Here is a pre-Halloween picture of Marie and Ben at the pumpkin farm. I just loved Ben's smile in this one! (note: there are a couple of new Halloween/Birthday pictures below also)
11/03/03 UpdateWe checked into the hospital today for another course of high dose methotrexate. Ben will be in the hospital until at least Friday and possibly until Sunday.
Ben and Marie got a piano (see the picture below) and Ben is quite the 'singer'. Grandma Swanson joined in the fun.
October 2003 Updates
10/31/03 UpdateJust a halloween shot. Ben was a one star general. This is an authentic US Army uniform, it even has his last name on it. Thanks to Grandma & Grandpa Swanson...
10/26/03 UpdateBen is doing well. The first week of November is the next time we are in the hospital.
We celebrated Ben & Marie's birthdays on Saturday. It was in the 90's here, so a little hot. The kids loved it. We had snowcones. Here is Ben with Iggy the Clown. Ben helped her with some of her magic tricks!
10/23/03 UpdateBen is two today! We are celebrating on Saturday with a big party in the park. Carolyn has air bouncers, snow cones (still in the 90's here) and Halloween crafts as well as a clown. Marie's Birthday is on Saturday.
Life is extremely busy, but somewhat uneventful regarding Ben. He seems to be doing pretty well. We have not seen signs of hair loss. His speech is starting to progress - a few new words here and there. He loves to dance and run.
He has one computer game he really loves - he says "computer" but it sounds nothing like computer - yet!
10/10/03 UpdateBen sailed through a week in the hospital thanks to our friends! Our wonderful friends came by and made our lives so much easier. This was the first time we did not have a roommate in the hospital - sure wish is was this way every time.
Ben received his Methotrexate for 24 hours via his port. After that he received Leucovorin rescue - essentially it shuts down the harmful effects of the Methotrexate. We were released pretty early this time because all his level returned to normal nicely. Five days total.
His dose of Methotrexate is much higher than what he received last year (5g/m2 vs. 20mg/m2 last year). Dr. Etzl said we should expect Ben to lose his hair in about three weeks. He might not, but it is more likely that he will.
10/3/03 UpdateBenjamin had the porta-catheter surgery today. It went fine. He screamed when the nurse took him into the operating room, which broke mom's heart. The new porta-cath is on his left side. He seems to be doing fine with it, but does say "owie" when I pick him up, so I have modified how I pick him up (not under the arms). We are giving him codeine pain medicine. He is all ready to start chemo on Monday.
Ben has a new cousin, born today! William David has the same birth weight as Benjamin: 8 lbs, 3 oz. Check out some pictures of him here.
10/1/03 UpdateBenjamin was complaining of "owies" in his knees on Monday and the pain woke him up in the night. We were worried about possible bone lesions, so we had his legs x-rayed. The X-rays look normal. He also got a stomach virus and was sick with that on Tuesday, so his "owie" could have been from that. He is doing better now and is eating.
Ben's doctors have decided that the best option to try for chemo is to do the high dose methotrexate. It is a high dose, given over a 24 hour period in the hospital. Then we wait 24 hours and give him a drug to "rescue" his cells. It will take about 4- 5 days in-patient in the hospital. We will do that every 3 - 4 weeks. Its been a while since we've had to do hospital time. Unfortunately, we know what we are in for.
Ben is having his new port put in this Friday a.m. It is an outpatient surgery, so we will go home for the weekend. Then we are going into the hospital on Monday to start his first course of the new chemotherapy. It is difficult to manage a child in the hospital and one at home. We hope also this chemo does not make him sick or hurt his kidneys.
Ben hamming it up!
September 2003 Updates
9/27/03 UpdateWe heard from Dr. Etzl today. They are still trying to decide on which chemo option we are going to use on Ben. Looks like we are going to try a month of Methotrexate and 6MP. This would be oral and we do not need to have his port in for that. After that we might go to the high dose Methotrexate.
On the bad news side the CT seems to be showing a new 4mm nodule on the apex (top) of Ben's right lung.
9/25/03 UpdateBen had his porta-catheter removed today because of infection (see updates below). Carolyn just called and said the surgery went well even though Ben was grumpy this morning going into the surgery. We will give him a break for a while and then have another surgery to add a new one back.
About Ben's Porta-Catheter: The port was placed under the skin in his chest about a year and a half ago. The port allows for easy injection of medication and chemotherapy. This link has some good pictures. The port is the big part you put the needle into. The catheter is the thin tube that goes into on of his arteries. Instead of searching for a vein and putting him though a bunch of pain, all we have do do is numb the skin above his port and then poke a needle into the port. The medication then goes from the port, through the catheter line almost directly into his heart to be distributed to the rest of his body.
Here are the kids at the zoo last weekend: Ben getting drooled on while feeding the llama & Marie riding an elephant.
9/19/03 UpdateWe heard from our doctor today. We learned two not so good pieces of information...
- Ben's port is infected. We have a surgery scheduled for this coming Thursday to get it. He will get a short break and then have another surgery to get a new one added.
- Two of Ben's brain lesions are bigger. We do not know by how much or what this means to us as far as an action plan. We just know it is not good news. We will update when we learn more. Below are some images of the 'new' larger lesions. Currently we believe the lesions that have grown are the lesions we found for the first time on the scan previous to this one. All the pictures below are of the two new lesions from different viewpoints and different cross-sections. Look for the bright white spots.
Top View
Back View
9/17/03 UpdateBenjamin finished with the IV antibiotic on Monday, so we took the backpack off of him and he was once again free!!! First thing we did was swim in the pool, as big sister had been asking to go for a week!
Ben had CT and MRI scans today. It was another long and difficult day, as scan days usually are. A scheduling error by PCH meant we had to wait around longer and Ben wouldn't drink the contrast again so we had to put the tube in his nose and down into his stomach. We are awaiting word from the doctor on the results of the scans.
We also took blood counts and another blood culture today. Hopefully the blood culture will be negative for the bacteria. If it is positive, we will be looking again at replacing the port. We are starting neupogen shots again today for 5 days. We will try for chemo next week.
Ben is talking A LOT more now. He is using "NO" almost non-stop all day. He also says please (sounds like "peeesh") and his sister, Marie's, name!
9/08/03 UpdateGood news. The sensitivities on the bacteria found in this week's cultures were different than those found in the previous occurrence. What this means, is that while it is the same bacteria found in all three, the form of this one is slightly different. So, it does not appear this is the same lingering infection, but rather a new infection. Bottom line is that we are not planning to remove and replace the port. So, no surgery is planned for Benjamin.
We are going to continue giving him the Vancomiacin antibiotic for another week to make a total of 10 days. So, he will continue to carry the IV pump around with him in the purple hippo backpack.
Ben & his Papa Stokman at the farm back in early August...
9/07/03 UpdateWe found out on Friday (9/5) that the blood culture taken on Tuesday (9/2) was still positive with the same bacteria. At this point, we are worried there is an infection in the port which we will not be able to get out of the port. This happens sometimes.
We brought Benjamin into clinic and took yet ANOTHER blood culture on Friday (9/5). Up until this point, we had not given him any more antibiotics because he was having no more fever and was active and happy and showing no other signs of having an infection. His doctor wants to be absolutely sure there is an infection in the port before we remove it. So, we will wait another 3 days for this blood culture. If it comes back positive, we will discuss removing and replacing his port.
To protect Benjamin while we wait, we went ahead and started him on the Vancomiacin antibiotic. He will continue with it for 3 doses a day until we decide what to do this coming week. So, he is again carrying around the purple hippo backpack on his back with the IV pump in it. (see 6/24/03 update for a picture of the backpack). Thankfully, the backpack is not slowing him down one bit from his life's work, play! He is a trooper!
Here is Benjamin driving his Cousin Cole's John Deer Tractor at the lake. It is a pedal tractor with a working "scoop".
9/02/03 UpdateBenjamin had a positive blood culture from his port from last week. He had spiked a fever (over 102) on Thursday evening. We gave him Tylenol and the fever came back down and he seemed fine. But as a precaution, they took a blood culture from his port on Friday and gave him antibiotics. He has had no more fever since the initial spike.
We found out today that the culture taken on Friday was positive for the same Staph bacteria as the previous two. Because it has been the same bacteria three times, they are now worried there is a low level infection residing in the port. They took another culture today and if it is still there, we may have to remove his port-a-cath. If they want to put a new one in they will wait a few days after removal and then put a new one in. That would be two surgeries. We will await results from the culture. It could be 3 days before we know for sure if it is negative.
Here is Captain Ben driving the big boat back in July...
August 2003 Updates
8/27/03 UpdateBen started his 12th course of 2CdA today. He is going to only get three days worth (less than the four he has been getting and less than the standard five he had in the beginning). All else is well. Ben is such a cuddly bear lately. Loves to give kisses and hugs. He is starting to mimic other noises like cars and dogs.
Thanks to our neighbor Russ for taking this cute picture...
8/19/03 UpdateBig Ben had his counts today. Again, his white blood count (ANC) is too low to get chemo. So it is neupogen shots all week again and we will try next week. If his counts stay low, we may switch to high dose Methotrexate. Methotrexate did not work in the past for Ben, but the dose was lower, perhaps with a higher dose it will get into the brain more effectively. Methotrexate is less harsh on bone marrow and blood counts than 2-CdA is.
The team has been working on Ben's Run full tilt. Tammy Niebling is doing a fantastic job organizing the entire sponsorship process. We still need many people to help us get business sponsors. If you are interested, PLEASE let us know. Check out the new web page at www.bensrun.com.
Here is some of the Ben's Run Team hanging out, having fun: Tanya, Suzanne, Carolyn & Sharon. In the background, you can also see Steve and Tammy holding Carter.
8/12/03 UpdateBen had blood counts today. His counts were too low for chemo, so he will receive neupogen shots for another week and try again.
We are still very concerned about Ben's three new brain tumors. The doctors are tossing about ideas of 'stronger' chemotherapy. We will discuss with Dr. Arceci more this week.
Marie was in Indiana for six weeks. Carolyn flew back and forth with Ben for scans and chemo. The big news was that Marie slipped getting out of the minivan and split open her chin. She needed six stitches. Everything healed OK, but about a week later she fell on a concrete and ended up with a tear about twice as big. She is healing up OK, but will probably have a pretty good scar. We are on top of her every minute to make sure she does not fall again.
This picture of the family was in the Ahwatukee Foothills News newspaper this last Friday. Read the article here.
July 2003 Updates
7/22/03 UpdateBen started his 11th course of 2CdA chemotherapy today. He has had a break from it since April 3.
7/17/03 UpdateBenjamin had his MRI scans yesterday, July 16. Unfortunately they did not look as good as we had hoped. We were hoping that the steroid, decadron, would help to shrink the brain tumors so he could get a long break from chemotherapy. If we give him too much chemo, his bone marrow will continually take longer to recover. As it is, his blood counts yesterday were low, with an ANC of only 480.
The doctors did some comparison of the tumors in yesterday's scans to the previous scans. The existing tumors all looked at least the same size with some even showing as being less dense, which is good. And the tumor in his ventricles was not bigger, so his ventricles look good. However, the doctor did see 3 NEW lesions in his brain. They were very small, but still new lesions is not good. They were seen in his brain in the left parietal, right parietal/occipital cortex, and right temporal occipital.
Due to these new lesions, it is too risky to stay off the chemotherapy. So, Benjamin will be starting back on the 2CdA on July 22 (If his counts are high enough). He is starting to get neupogen shots today. If his counts are high enough on Tuesday, he will get 4 doses of 2CdA, one each day Tuesday through Friday. This will be his 11th course of 2CdA.
This picture of the boys ended up in the 'Around the Lake' newspaper...
7/15/03 UpdateBen's infection cleared up and he finished the antibiotics on June 30. We took out the needle and off went the backpack and he was a free man again! We went to visit our family in Indiana and spent some time at the lake in Michigan over the July 4 holiday. We all had a great time. We also drove and saw some friends in Cleveland and visited their wonderful zoo and science museum. Then we drove to Pittsburgh to see our relatives! What a blast the kids had, we went to Kennywood park and Ben and Marie rode all the rides. This was their first amusement park experience and they loved it! We'll put pictures up later, so check back!
Here is a picture of the cousins, left to right: Cole, Marie & Ben ready for the 4th of July Parade at Diamond Lake. Marie won best dressed for her outfit. She was very cute marching and waving her flag.
June 2003 Updates
6/24/03 UpdateBen went in last Wednesday for a routine blood check. A few hours later he had a 104 degree F fever. We think his port might have gotten infected. We took him back into the clinic for some antibiotics. By Friday the blood culture was positive for a staph infection and he was put on Vancomiacin. He is now on a continuous pump (24 hours a day) that he wears on has back with a backpack. This complicated our road trip over the weekend to Las Vegas for our Cousin Cheryl's Wedding. All worked out though! He just marches around with the pack on like it is not even there. We are not sure yet when he will be off of it. He has not had a fever or been very fussy since the first few days.
Most of the pictures below were taken at the Children's Museum in Las Vegas. It was a very neat place and not crowded! The kids had a great time. In the top row, Ben did a lot of shopping and Marie rang him up at the cash register in the play grocery store. The second row has Marie and Grandma Stokman at the M&M factory store on the strip. They had a really cool 3-D movie of the M&M's. In the last picture, Papa Stokman is blowing a giant bubble at Marie (also in the Children's Museum).
6/12/03 Update
We have been in touch with a family that has a little boy with a very serious case of histiocytosis. Garin has gone through so much. He has not tolerated chemotherapy well. His case of LCH is one of severe liver involvement. He is now down to one of his last options...a bone marrow transplant.
Unfortunately his insurance will not pay for the BMT, they say it is 'experimental'. Because histiocytosis is so rare and bone marrow transplants with this disease are rare (there have been about 24 total with 14 cases surviving) the insurance company considers it experimental. The family has gone though the appeal process, but their insurance will not pay (reminds me of the movie John Q.). The total cost of the transplanted is estimated to be around $500,000. This family has few resources and is stretched to their end - they have no where near a half million dollars. Even though Garin is very sick and has been in the hospital for many months, his mother is still working out of necessity - I cannot imagine how they are getting through this.
From our personal experience I know most everyone wants to help - in this case it is easy to donate. You can donate directly to Garin's transplant fund. After you read about Garin you can click on the 'Make a Contribution' button on the left side and donate online with a credit card. All of this is done securely with COTA (Children's Organ Transplant Association). Garin's bone marrow transplant is scheduled for June 18th.
I have sent money and I hope you will do the same. Please take this time to donate, even if it is only a couple of dollars.
6/8/03 UpdateBen had his first dose of Decadron on May 26, 27, 28, & 29. He seemed to handle it fine. By the end of the week he was sleeping a bit more and was a little irritable, but otherwise there were few side effects. He will get his next dose on June 23. We have his next MRI scan scheduled for July 16. Other than that, there is little medical activity going on with him. We are happy for the break.
He has had 2 sessions of speech therapy. He is making more noises and motorboat sounds. He walks around the house looking for Bill saying "da", "da". He also knows more sign language signs, including signs for bubbles and ball. He laughs a lot, the cutest sweetest little laugh. It is a joy to hear and we are so thankful he is with us!
Ben and Marie recently visited a friend's house and had lots of fun with home-made finger paints. Here on the left are Ben, Marie, Dasan, and Maya demonstrating their artistic abilities. And on the right is another recent picture we had taken of our patriotic kids (Ben & Marie).
May 2003 Updates
5/24/03 UpdateWe are definitely starting on high dose Decadron. We met with Dr. Etzl this week and discussed everything.
I have added some of Ben's PET scan images to the CNS page. I have tried to align them to the MRI scans. We can see all of the lesions on the glucose scan except for the large 'yellow' one, the one that has reduced in size. Perhaps the medication (2-CdA) has done a better job of reaching the yellow one?? We also believe we see a new lesion. In hindsight we can see something on the MRI.
Below is an example of the PET scan images. The marker here is the glucose. Bright areas indicate areas of high uptake of glucose. What you see is three shots from different angles; back, side and top. All three of these shots include a bright spot (bottom left in the first or back shot, bottom in the second or side shot, middle left in the third or top shot). This is what we believe is the new lesion.
How does the new lesion change our course of action? Currently it does not. We are going to treat with the Decadron and monitor in two months with a MRI scan. It has raised concern, in my mind, that perhaps the 2-CdA did not penetrate the blood-brain-barrier as well as we had hoped. Perhaps the drug reached some areas better than others. We do not see the largest (named 'yellow') at all on this glucose scan. This lesion is the one that was observed as smaller on the MRI - good news - but none of the other have changed in size on the MRI and they ALL light up on the PET.
5/20/03 UpdateLooks like we might start on high dose Decadron. It would be taken orally once a month for 4 days in a row. This would give Ben's bone marrow a rest - other chemos like Etoposide would not. See Dr. Notesfor more. We will update when we learn more.
On Sunday we went and saw the 'real' Thomas the train! All the kids loved it. In the first picture you see Ben looking out the window during the train ride. In the second you see Marie and Ben watching the toy Thomas go round the really cool track. In the third image you can see Leanne, Maya, Dason, Mike and Thomas!
5/16/03 UpdateWe are back on our emotional roller coaster. We have been on such a high with the good MRI scan results. Today we are in a funk. We heard from our doctor that the PET scan shows activity in the brain lesion areas. We are not sure exactly what this means yet. No activity is what we wanted. We know it is not good, just how 'not good' we still do not understand. There are so few PET scans of tumors of this type, so the doctors do not have a strong baseline to compare too. Ben actually had two different PET scan markers: C11-Methionine (an amino acid that is readily taken up by tumors) and FDG (the G stands for glucose - a sugar taken up by all active cells). Both types are showing up active in Ben's tumor areas.
What next?? We are not sure. The local PCH doctors are going to review the results in their group on Monday. We are also going to be contacting Dr. Arceci to see what he thinks we should do. There are some chemo drug options we could try next, but many of them are not very effective in the central nervous system due to the blood-brain barrier. Decadron, 6MP & Etoposide are just a few of the possibilities. Unfortunately there is no strong science to select the correct one - if the correct one is even out there.
Ben and Marie like to play peak-a-boo with each other in the bottom of our entertainment center. What a set of book ends!
5/15/03 UpdateYesterday Big Ben had a PET scan or Positron Emission Tomography scan (Link 1, Link 2). This type of scan looks at activity in his brain as opposed to the structure. A radioactive tag is attached to a sugar. Areas of high metabolic action (i.e. active tumors) take up this sugar much faster and would be highlighted in the scan. With this scan we hope to find that Ben's brain tumors are inactive - keep our fingers crossed! This is in contrast to CT and MRI which are good at looking at bone and tissue structure respectively, but not good at looking for areas of activity. We will post the results as soon as we get them.
Carolyn and Marie set up a fantastic ice cream social party over the weekend to celebrate Ben's positive MRI & CT scan results. Marie had a wonderful time picking out ice cream toppings. It was nice to see so many people and just relax.
April 2003 Updates
4/30/03 UpdateBen's speech seems to be affected by the disease, perhaps the brain lesions are in an area that is interfering with his ability to talk. He understands everything and is using sign language, just no speech. He tested at a nine month old level when he is 18 months old. He is now seeing a speech therapist.
Ben at the butterfly exhibit at the Desert Botanical Gardens...
4/27/03 UpdateBen's scans were almost a week ago on April 21. We got good news!! All the nodules in his lungs are gone. This means his lungs are CLEAR and the CT of chest/abdomen/pelvis was NORMAL. Also, the Brain MRI showed that all the lesions there remain stable except for the one large lesion between the ventricles, which is SMALLER!
We are very happy with this news. This could mean that we are done with chemotherapy for a while. We are waiting for Benjamin's doctors to decide on whether we will stop and observe for a while or move him to a less harsh chemotherapy drug.
Even though he is not out of the woods yet, this great news is cause for celebration!
Benjamin loves to play on the computer. Here he is doing the coloring on Reader Rabbit. He is very good at it. He uses the mouse and the keyboard to color in the pictures.
4/8/03 UpdateBen has been bruising and bleeding very often lately. Usually from a fall or running into something. Today he ended up getting a platelet transfusion. His platelets were below 7,000 when they want them to be over 20,000. They are down because of the chemotherapy. He may need another transfusion on Friday. This is the first platelet transfusion Ben has needed.
4/6/03 UpdateWe have been reflecting today on the past year... it was one year ago today that we went into the hospital with Ben's eyelid swelling. It has been a long year - seems like several. Our family is glad to be here and not experiencing last year!
Ben finished four days of chemo. We will decide about further chemo after his next scans, possibly on April 21. Right now our future path is unclear.
The little man is a bit grumpy this week, probably from coming off the anti-seizure medication.
Ben loves to give kisses now. He is also using hand signs for 'more' and 'milk' all the time.
Here are a couple of shots from our ski trip last week. Ben is napping next to the rink while Marie tries ice skating for the first time with Grandma Swanson & Mama...
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