Thursday, May 21st, 2009
Our visit to the hospital yesterday for Benny's 2nd round of the Nimo Chemo was actually a great day. We somehow got through the day on the fast track, there were no delays and we were home earlier than the week before even though this week we had to wait for lab results and meet with Dr Stew. Benny did great with the chemo, we've seen no side effects from the first week, he's just enjoying life as usual. He did sit by himself for the needle poke again. It wasn't willingly, we did get a few punches and some mad faces but he did it.
This weekend is Memorial Weekend in the US, the unofficial start to summer. We are all looking forward to summer, school ends in just over 2 weeks so life has been very hectic with end of year activities. Lily cannot wait for school to end, she loves school but "it's hard having to do what the teacher says". Every morning she just wants to stay home and play with Benny.
We are expecting great weather for our "Big Kids Sale" this Saturday at the Lake Forest Rec Center from 9am to 2pm. If you are in the area come and visit us, the photo is of Benny with a very small selection of stuff we have for sale. It's being hosted by Cristina Morales, a senior at LFHS, all proceeds will be donated to Benny's World, more details below. We cannot thank Cristina enough for putting this event together for us!
We also have a Team Benny's World event coming up if anyone would like to join us. We are going to bicycle the 10 mile family ride in the Ride & Stride for Wishes event on Sunday, June 14th. This is a fundraiser for Make-A-Wish. We did the Children's Parade last year which was very cute, this year we are stepping it up to the 10 mile, (Lily and Benny will both be getting a ride on the back of our bikes). If anyone would like to join us, please sign up as part of our team, they provide a great lunch and entertainment after the race. To learn more about the event and to join our team, Follow This Link.
Have a great weekend,
Love Lisa.
Wednesday, May 13th, 2009
Benny's first round of the "Nimo Chemo" was uneventful, thank goodness. He had no adverse side effects during the infusion and after a nap on the way home was back to his normal destructive self this evening. We are scheduled to go back for the next 7 weeks once a week for an infusion and then he'll get another MRI. If the tumor is stable, zero growth, then he goes to the consolidation phase which is an infusion every 2 weeks. He is getting very brave, both times this week he sat by himself while they inserted the needle into his port. (He did have the numbing cream before hand.) Usually I have to pin him down in my arms, but I guess he's realized there is no escaping, so to reassert his control he's going to do it by himself! He never misses an opportunity to remind you who is boss, I guess it's serving him well. In the words of our good friend Kate, let's kick some cancer butt! Thinking of you Kate.
Love Lisa.
Monday, May 11th, 2009
Benny didn't start his chemo today, it's going to be Wednesday. We got all the paperwork done, blood draws and a "pee" sample so on Wednesday we are good to go.
The photo is from last Friday, my mother's day present to myself, tickets to Elmo with Benny. It was so much fun, just the two of us, how easy is it to only have one child! We had a great time together, we are still Wiggles groupies but the Sesame Street gang put on a good show.
Love Lisa.
Sunday, May 10th, 2009
HAPPY MOTHER'S DAY
I have much to update but it's late as usual and I need to get to bed. I had a lovely Mothers Day, Bella surprised me with some stolen daffodils, I'm sure it's either the Murray's or McGreevy's I need to thank! I hope all our mom's and mum's had a special day.
Benny is still doing great, swimming, riding his tricyle, going to Gymnastics, storytime at the Library, music class, the Drop-In Center, life is good! However, before we push our luck too far we have decided to get Benny started on a new treatment in the hope that it will be more effective while he is so healthy. Our options are nothing to get excited about so we have been dragging our feet a little but Benny is going to start on his new treatment tomorrow. We had picked a Phase 1 clinical trial with the drug Enzastaurin however the spot that was supposed to open on Friday for Benny didn't so we are going with our second choice, a Phase 2 clinical trial with the drug Nimotuzumab. This chemo will be given to him once a week for 8 weeks and then every 2 weeks. It's given via IV infusion, he still has his port, so we'll be going to Children's Memorial Hospital every week. This chemo seems to be very well tolerated, it's not like a highly toxic chemo that knocks out all your cells, good or bad, it's pretty targeted so we are hoping for not much more than him being a little tired. We have more toxic options next but are not ready yet to compromise his quality of life whilst he is symptom free.
I'll let you know how it goes and all the other stuff we have been up to the last few weeks.
Love Lisa.
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