Clinical Trial Decision Made

[mkat]

We got news of the randomazation this afternoon. Michael will be having an AUTO SCT around Jan 12th. His 6th round of chemo is on the 22nd, right before Christmas and then they'll start after his numbers have rebounded. We are ok with being on this side of the study b/c we know it is the most aggressive treatment he can have. He is responding to the chemo but no where near NED after 5 rounds. But we are both so nervous about how much will be required of both of us. I'm worn out from the flurry of the last 6 months and now the holiday season with very excited kids. And of course Michael has been through major surgery, kidney stones and stints, and 5 rounds of chemo while working 40/hrs/week since mid-Sept. But this is how it's going to happen so we'll be counting on our supportive friends to continue.

We are grateful we heard the news a little earlier than expected and we have had time to talk and process all of it before discussing it with everyone we know. I think there was an SCT tips thread floating around, could you bump it if you run across it?

Also, advice on what to tell the kids? Karina doesn't get any of it b/c she's 2, but Aidan understands. He knows daddy is sick and that's why he has no hair. They wait by the door everyday for Michael to come home from work, how do I explain that he'll be gone for almost 4 weeks? I want to start talking about it soon.

I know I will need the great support of my cyber friends too... Thank you for your thoughts.

[ag2006]

Hi Kat. Here's the link to the recent SCT post, CLICK HERE. I also bumped it for you. Best wishes to you and Michael.

God Bless you both.

Anne

[skylin]

grate big 1s!!! truth!
i aggre, tths is actuly good news fr micchael, bsst bet for compleet NED.
bt bboy i can see the nervsnss too. bless yuorr harts.

i'l chek tthat thred owt. i rmembbr it.

tth kids. wow! yeh, erlyr the bettr, i gess. an simpl. caus of ther age. mabe evn a posttr-bord&stikr calndr tthay ccan see. tthts wwht i wood do. i'd hav him ggo to wrrk on notes to tthm rite now too, whn he's feelngg up to it. for yuo to keep and to reed tto tthm at bedttime whn he's not tther. (or who evr is wtth them, if yuo hapn to be at tth hosptl tthat nite) also take TONS of pics! and bring THEM owt one at a ttime ffor tthm. let tthm cary one of tthos small photo albbms, ya no wht i;m ttalkn bbowwt? my neese has one of me caus wwe liv so far away, sshe is 4. it has pics of me tthru owt a norml dday, wavn at her an sstikn owt my tung and....ya no.

i ddontt no sweety, jus my thots erly bffor coffee. ya no i'm heer ffor ya! TRUTTH! GO TEAM MICHAEL!!!

HEERS TO HOPE

sara

[pine soul]

I haven't worked for months and can't imagine working 40 hours while going through chemo. Michael must be a very strong person. I don't have kids but Sara's advice sounds really good. I know I've seen some books written just for children when I've been looking around at books on cancer. You may want to check out your local bookstore or Amazon for a book for small children. Here's a link to one I found on Amazon Amazon

[mkat]

Anne - Thank you for finding the SCT thread, I'll bookmark it lots of referance.

Sara- those are some really great ideas to help keep the kids involved while Michael is gone. Aidan is already worried about Michael b/c he'll tell people at the store that his dad is sick. I hope to keep their life as consistant as possible but I don't know how I'm going to be at the hospital to support Michael and still with the kids enough. It's pretty overwhelming.

Nancy- yes Michael is very dedicated and knows that working will help our family the most. And it keeps life more normal and gets him out of the house. Thank you for the book recomendations.

[JeanneK]

Kat,

I don't have any real information for you, but wanted you to know I'm sending lots of hope and wishes for Michael to sail through this. He's young and strong, so things look good.

Kids are so resilient and amazing. I think you've handled it beautifully already. Now they just need to know daddy needs to go to the hospital for a while for some strong medicine.

Bless your hearts. You've been through so much. Our thoughts are with you both.

Jeanne

[PugMama]

Dearest Kat and Michael and Karina and Aidan,
My prayers and thoughts are with you at this time. Is this similar (and I feel really dumb asking) to what Deirdre is doing: Auto, self, ?? Jeanne, now Anne are trying to get you, others, Transplant help, knowledge (which is "power"); Michael, as has been said, is also incredible! (I remember my Dad worked right through chemo!) That strength Michael has should "do him well." Like Cliff's incredible bike riding! (Physical can mean as much mentally in terms of strength.)

I hope your Holidays will still be as Happy As Ever. Everyone will look out for that, You.

Sara's ideas are just great, esp. before coffee .
I would add, unless I missed it (very possible), that Aidan, even little Karina, write notes as well (Karina holds crayon, makes "pictures"). They can make little gifts, send a "favorite lovey" which Aidan will know will keep Michael *strong* and *healthy*...I say this because even if things don't really go straight to Michael, you can be the go-between, and I'm guessing Michael will truly "receive" as much as he is being given, even if arriving only in thought, or photo.

Aidan will have a sense of *helping* which Children want so very much to do, when things are not routine for awhile...when "control" seems missing a bit. Normal routine, normal routine (but allowances for emotions of *course*!) helps, even if a Grandma, Friend is helping.

The calendar is great, and Sara's idea for Michael writing notes will make a real exchange!

I worked in Child Life at a large Children's Hospital before I could no longer work: outpatient, inpatient and rehab (brain, spine injuries). Our job was to "look at, help" the entire Family. I am going to, after *lots* more coffee, or tea, try to remember.

Immediately the dolls made for Children w/ cancer come to mind, except in form of Daddy. Aidan could be given, or you could work together, on a special doll used to explain only most minor details, like "Daddy really misses you, but he knows it could be only # of days until you can see each other,"(meanwhile each looking at photos Sara suggested!).

Jesse, whose Father travelled long, long amounts of time (as Jesse almost did, time); Jesse has told me forever of missing his Dad. He just said "listening." (His Dad didn't call or write often)

So (if Sara didn't suggest it already?!) tapes, recordings (Bible if you read together, stories, whatever Aidan is used to hearing from his Dad's voice. Jesse said "guidance." We didn't have sons, but there must be an exchange already between Father and son. (I made sure there were daily calls! From Europe! )

Well, I'll stop for now. I hope I have "hit" on something. W/ transplants, I'm finding "helping" is a new skill to develop, as there seem to be so many! How to show Love and Caring.

The BEST to you all.
Prayers, Prayers.

Love Always LizziePugMama

P.S. Yikes, I forgot a *most* important thing, reciprocal to "lovey" to Daddy; whenever I had to be hospitalized, I always gave, especially our youngest Daughter, something of mine that was "very special," to hold, always. Just like the album, but again, treating these precious angels as exactly that, giving a special something *only* for each of them.

Also thinking anjou will have *tons* of ideas!

[mkat]

Oh Lizzie... I'm running out the door with the kids but your list was an awesome, awesome help! Thank you so much for taking the time to type it all out to me. We'll start on finding special things just for the kids. Thank you!