Jen 2012

jen2012 said:

Hi Jeff - thanks for

Hi Jeff - thanks for checking!  It's very kind of you.  It does seem like it's been a while since I've posted.  I'm still reading, but haven't had much time to respond.   It's been a busy couple of months, with end of school year, sports, scouts, prom and our oldest graduated from HS a couple of weeks ago!  Very exciting.  When her name was called, my husband yelled out - 1 down, 2 to go.  He got several chuckles, but while it was funny, I know he is worried about seeing the other two graduate. Especially the little guy who hasn't even started preschool yet. 

My husband is doing well.  He started Folfiri the end of Feb. I think he had one or one and a half treatments and his platelets went to 60s (I think)  His onc kept putting him off - hestitant to do chemo until she finally pushed him into a 2nd opinion.   I was relieved - I've been trying to get him to another doc for some time.  I emailed Dr. Lenz to see if he could consult by email/mail/phone.  He answered me the same day - a Sunday. Very nice man!   He could not consult, but gave some thoughts and   referral to a local onc, which was actually the same doctor that my husband's onc recommended.  We got in to see him in May.  He suggested adding erbutux and not worrying about platelets unless they go under 50.  So he discussed with my husband's doc and folfiri with erbutux were started end of May.  

His CEA went from 303 on May 21 to 102 on June 4, to 36 on June 17!!  And he is handling it well - other than the nasty rash and getting wiped out on the Tues/Wed after the Friday infusion.   His pain has lessened, he continues to work full time and keeps up with the rest of us.   

On an exciting note, it looks like we may be heading to disney soon.  Our social worker has been so awesome to us.  She recommended him for a program that is like Make a Wish, but grants wishes for parents that have cancer.  They approved us and it's in the works.  The reason sucks to be honest, but he is so happy to be able to give us all something to look forward to and the kids are beyond excited.  Especially the oldest - haha...she is digging up old pics from our last trip when she was 9.  She has plans to recreate some of the pics, has a list of characters she wants to meet...has ideas for pictures with these characters.  Has even put a playlist of disney music on her ipod   

I hope you are doing well.   I see you posted an update, so I'm heading over to read it!  Thanks Jeff

that she wants to recreate the poses from her childhood trip!  Will want to see those! 

jen2012 said:

Hi Jeff - thanks for

Hi Jeff - thanks for checking!  It's very kind of you.  It does seem like it's been a while since I've posted.  I'm still reading, but haven't had much time to respond.   It's been a busy couple of months, with end of school year, sports, scouts, prom and our oldest graduated from HS a couple of weeks ago!  Very exciting.  When her name was called, my husband yelled out - 1 down, 2 to go.  He got several chuckles, but while it was funny, I know he is worried about seeing the other two graduate. Especially the little guy who hasn't even started preschool yet. 

My husband is doing well.  He started Folfiri the end of Feb. I think he had one or one and a half treatments and his platelets went to 60s (I think)  His onc kept putting him off - hestitant to do chemo until she finally pushed him into a 2nd opinion.   I was relieved - I've been trying to get him to another doc for some time.  I emailed Dr. Lenz to see if he could consult by email/mail/phone.  He answered me the same day - a Sunday. Very nice man!   He could not consult, but gave some thoughts and   referral to a local onc, which was actually the same doctor that my husband's onc recommended.  We got in to see him in May.  He suggested adding erbutux and not worrying about platelets unless they go under 50.  So he discussed with my husband's doc and folfiri with erbutux were started end of May.  

His CEA went from 303 on May 21 to 102 on June 4, to 36 on June 17!!  And he is handling it well - other than the nasty rash and getting wiped out on the Tues/Wed after the Friday infusion.   His pain has lessened, he continues to work full time and keeps up with the rest of us.   

On an exciting note, it looks like we may be heading to disney soon.  Our social worker has been so awesome to us.  She recommended him for a program that is like Make a Wish, but grants wishes for parents that have cancer.  They approved us and it's in the works.  The reason sucks to be honest, but he is so happy to be able to give us all something to look forward to and the kids are beyond excited.  Especially the oldest - haha...she is digging up old pics from our last trip when she was 9.  She has plans to recreate some of the pics, has a list of characters she wants to meet...has ideas for pictures with these characters.  Has even put a playlist of disney music on her ipod   

I hope you are doing well.   I see you posted an update, so I'm heading over to read it!  Thanks Jeff

That is good news. 

A trip sounds like a wonderful thing to look forward to. Glad to hear it. 

Sue - Trubrit

wolfen said:

Jen

So happy to hear from you! Such good news you have shared. Don't laugh, but have not been to Disney since July 4 1976?. Big mistake to go on the Bicentennial. So many people, you were like a sardine. Couldn't even see the ground.  LOL

Glad that your hubby is doing much better. I still don't see how you and Ann manage to keep a sane household.

Luv,

Wolfen

I was at Disneyland in '76 too!  It was a total freaking nightmare, even to 10 year old me.  I'd never seen so many people all in one place.  

Here's hoping Jen's summer trip will be much less hectic!

jen2012 said:

Hi Jeff - thanks for

Hi Jeff - thanks for checking!  It's very kind of you.  It does seem like it's been a while since I've posted.  I'm still reading, but haven't had much time to respond.   It's been a busy couple of months, with end of school year, sports, scouts, prom and our oldest graduated from HS a couple of weeks ago!  Very exciting.  When her name was called, my husband yelled out - 1 down, 2 to go.  He got several chuckles, but while it was funny, I know he is worried about seeing the other two graduate. Especially the little guy who hasn't even started preschool yet. 

My husband is doing well.  He started Folfiri the end of Feb. I think he had one or one and a half treatments and his platelets went to 60s (I think)  His onc kept putting him off - hestitant to do chemo until she finally pushed him into a 2nd opinion.   I was relieved - I've been trying to get him to another doc for some time.  I emailed Dr. Lenz to see if he could consult by email/mail/phone.  He answered me the same day - a Sunday. Very nice man!   He could not consult, but gave some thoughts and   referral to a local onc, which was actually the same doctor that my husband's onc recommended.  We got in to see him in May.  He suggested adding erbutux and not worrying about platelets unless they go under 50.  So he discussed with my husband's doc and folfiri with erbutux were started end of May.  

His CEA went from 303 on May 21 to 102 on June 4, to 36 on June 17!!  And he is handling it well - other than the nasty rash and getting wiped out on the Tues/Wed after the Friday infusion.   His pain has lessened, he continues to work full time and keeps up with the rest of us.   

On an exciting note, it looks like we may be heading to disney soon.  Our social worker has been so awesome to us.  She recommended him for a program that is like Make a Wish, but grants wishes for parents that have cancer.  They approved us and it's in the works.  The reason sucks to be honest, but he is so happy to be able to give us all something to look forward to and the kids are beyond excited.  Especially the oldest - haha...she is digging up old pics from our last trip when she was 9.  She has plans to recreate some of the pics, has a list of characters she wants to meet...has ideas for pictures with these characters.  Has even put a playlist of disney music on her ipod   

I hope you are doing well.   I see you posted an update, so I'm heading over to read it!  Thanks Jeff

It sounds like the chemo is working!

Have a ball at Disney! My kids loved that place when they were little. It's the happiest place on earth, so make sure you enjoy it!

Lin