October 2002 Updates
10/27/02 UpdateThe birthday party was great! The rain held off until the party was over. Marie loved the Giraffe bouncer. The kids decorated pumpkins, played and watched the clown show. Here Benjamin is digging into what is left of his cake!
10/24/02 Update (#2)We went to clinic and talked with Dr. Etzl, he has reviewed the scans with radiology and we have the following positive results:
Truly a wonderful birthday present!! Ben is slated to have two more courses of 2-CdA chemotherapy. Six is the maximum he can have of this type of chemo. Let's keep our fingers crossed and pray that the chemo keeps the lesions from growing anymore.
- The brain tumors seem to be the same size, maybe even smaller! Some of them have changed shade slightly, perhaps indicating some kind of aging or positive change.
- Some of the lung nodules may be slightly smaller, there does not appear to be any new ones.
- The kidney lesions is still questionable but no bigger.
See the Arizona Republic Article links below - Chris Fiscus, the reporter, did a fantastic job!!
Here is little Ben at a Rainbow Kids Picnic (for kids that have had cancer). We had a great time! Marie made the beautiful pumpkin and Ben tried to eat the jack-o-lantern's nose!
10/24/02 UpdateThe big articles are out in the Arizona Republic:
We had Ben's scans and are still reviewing them to see if the lesions changed size in his brain. We can say they are not drastically larger or drastically smaller. One of the views is not clear (missing contrast), so we may have some trouble making true measurement comparisons.
Boy Gives Face to Disease - Kin, friends raising funds, awareness by Chris Fiscus - Local (Phoenix) Section - Page B2
- Three similar articles, slightly different word counts in the community sections:
- 'Ben's Run' for Hope - Friends create event to battle rare blood disease by Chris Fiscus - Ahwatukee Community Section - Page 1, 848 Words
- 'Ben's Run' will battle rare disease by Chris Fiscus - In Chandler Community Section - Page ??, 821 Words
- 'Ben's Run' will battle rare disease - Foothills toddler inspires formation of December fund-raiser by Chris Fiscus - In Tempe Section - Page ??, 315 Words
Here is the Birthday boy with his first ever cake experience. He thought the cake was a toy!
10/20/02 UpdateIt's a big week for us...
Ben has his scans on Wednesday, we are hoping for good news, everyone wish us luck or say a prayer!!! Wednesday is also Ben's first birthday - hopefully his scans will be a good birthday present. We are a little (ok, a lot) nervous. Check back on Thursday for a discussion of the scan results. We are so happy to be here at Ben's first birthday - there was a time in the not so distant past that we were not even sure if we would make it this far.
On Thursday, we think Ben's Run and Ben's story is going to be on the cover of the Arizona Republic (unless a bigger story comes along). There should also be an additional article in the Ahwatukee section with more information on Ben's Run. Chris Fiscus interviewed us and some of the running team - we also had a photographer from the Republic come and take pictures of Ben and the family.
Friday is Marie's third birthday - she is VERY excited. We are celebrating Ben & Marie's birthday's this Saturday with a party at the park.
Aunt Cheryn came out this past week and was fantastic help. The kids love her!
10/15/02 UpdateBen started his fourth round of 2CdA yesterday. We will be going to clinic each day this week for a two hour infusion. His blood counts yesterday were relatively high. Higher than we've seen in a while. His ANC was 3286 (must be 1000 to give 2CdA). This is good, because it is showing us his bone marrow is recovering between treatments.
Carolyn's sister, Cheryn, is visiting us this week.
Alex was over visiting this weekend while his baby brother was being born. Marie and Alex are practicing for Med School by giving Ben a check-up.
10/7/02 UpdateBen did NOT start chemo today as planned! This is disappointing, but his blood counts are not high enough, so we will have to wait another week to start. The protocol that he is on calls for 2CdA treatments every three weeks as long as counts are high enough. We had to delay one week last time and this time two weeks. We will be giving him neupogen shots at home this week. We plan to start the chemotherapy next Monday, 10/14.
Ben is still continuing to try new foods (feeding himself). He loves Cheerios and Ritz Crackers. He laughs and kicks and gets generally excited when we get the box out!!
We are in full swing planning for Ben's run. We are pleased and excited with the progress the planning team is making. They are working hard! It is really shaping up to be a big event and we have found a lot of support in the community. It is very heartwarming to see all the support. We are starting to get some great sponsors and exciting silent auction items. Get ready to bid!! Visit www.bensrun.com for more info. And we still need volunteers to help plan and for race day.
This photo was taken this weekend at an ARR race. Beth, Rasa, Lynn and Bill were there giving out information about Hisitiocytosis and Ben's run. What a professional banner and poster of our Histio kids.
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