Rosie, I'm also glad to hear about Heather's return home.You are all still in my prayers! I started my chemo and rad to day....susanlaura1

Rosie
Glad to see Heather made iy home and my prayers are still with you all.
Diane

Rosie........There is no place like home that is for sure. Glad to hear Heather finally was well enought to make the trip. Hopefully, she'll be better able to rest and feel more comfortable. As always, I'm thinking of both you and Heather and sending you good thoughts. Thanks for the update, Rosie!

Sincerely, Donna

Heather coming home is a blessing for you and your family. My thoughts and well wishes are with all of you. Continue to bring us bright updates.

Sue

Rosie, So glad to hear that Heather is finally home!! I hope she is feeling better and stronger each and every day. I know being back home will do wonders for her. All my best to both of you!

Hi everybody,

Thanks for all the well wishes. And gnelson, thanks for the PICC line tips. The TPN line is working smoothly, but now the morphine line is tight. We just keep using extra flushes. We do have the 5 cc ones. Heather always had trouble with her veins. She's a very hard stick because her veins are small and they roll. I guess we just have to be careful.

She didn't make it for chemo on Wed, June 25th, but she did make it on the 30th. The first 3-4 days she had really bad nausea, but the meds controlled it fairly well. The Phenergan tends to knock her out, so she slept through much of it. They switched her from Zofran to Kytril because she seemed to be having a rebound effect with the Zofran in the hospital. The Kytril does seem to do a better job than the Zofran. Although the nausea isn't entirely gone yet, all in all, this time was better than the last.

We're having a deal of a time with the fistulas. As soon as she feels up to it, I think we need to get it in to see the surgeon to assess the situation. The antibiotics just aren't keeping the drainage under control. Although the front fistula looks like it is actually starting to heal, the side one is draining constantly. It's just like having a faucet turned on!

She's still not getting much nutrition through the J-tube and she isn't moving enough. It's hard to make any progress, though, because every time she has a chemo treatment, it knocks the wind out of her sails and we have to start all over getting her built back up.

Today, Heather's daughter, Cati, was feeding her some ice chips when Heather needed to have her trach tube suctioned. (Remember, Heather's arms are mostly paralyzed from the tumor in her spine, so she can't do it herself.) No one else was in the room at the time, so Cati turned the suction machine on and did it for her. She's watched us do it numerous times, but this is the first time she tried it herself. She was so proud that she was able to help her mom. I was pretty impressed, considering that she's only 6 yrs. old. She still has moments when she is bewildered and overwhelmed by her mother's illness, but overall, I think she is doing well with it.

There are days when I look at Heather and I feel like we're just biding time while this cancer works its evil. The there are days when I think she actually has a chance to beat it. Although I must admit, given her sloooooow progress, I feel the former much more than the latter. But "hope springs eternal" and we will continue to do what needs to be done and hope we are on the right path.

My thanks to all of you who have included Heather in your thoughts and prayers. And our best wishes are with all of you in return. Stay strong and keep fighting.

Rainbows & hugs,
Rosie

Thank you Rosie for taking the time to update us on Heather...

Sometimes this computer, that is such a lifeline to other people seems a very inadequate way for me to express my feelings.

Please know that I am thinking of and praying for Heather and your whole family.

Dinah

Dinah,

I am interested in hearing an update from you. Do I remember correctly that you had to stop the chemo? Have you been able to start again or are you pursuing any other treatments? Are you officially in remission or just in limbo? Sure hope it's the former.

Rainbows & hugs,
Rosie

Well Rosie,

Guess it's the limbo thing!!! They did stop chemo since my body wasn't fighting the bad side effects anymore and the blood counts just weren't coming back up. The side effects were getting worse (fingers, toes and ears)and he was concerned since some are (or can be) permanent. In other words he said he wanted to quit so if I ever needed it again I could have it. I will stay on the investigational drug (FDA just approved the sister drug Irissa). I'm still the poster child for this drug. Total start tumor mass was 95.6 sq. cm. Last CT Scan was 7.2 sq cm. Pretty good stuff.

I am trying now to get an appointmnet with a surgeon that will do RFA (new radio frequency surgery)on me. They were too big for surgery before. They aren't big on it because the tumors come back, but if this drug works then they shouldn't come back..."that's my story and I'm sticking to it" I hate the thought of just leaving the tumors there, but will (obviuosly) if I have to.

Otherwise I'm just going through some radiation side effects that I could really do without...But as we say around our house: "Radiation; the gift that keeps on giving"

Thank you for thinking of me and do please continue to keep the updates coming, either by email or board.

Take care - kisses for Heather,
Dinah

Dinah, you are still my inspiration in all that you have gone through. I don't know that I could maintain your positive perspective on everything, which was really evident in our mutual interview for the American Cancer Society. When I get to feeling sorry for myself at times, I often think about how you are handling your difficulties, and it reminds me to buck up and deal with it. As to your quote about the gift that keeps on giving. I love it!! I'm going to steal it and use it myself in the future. They say that theft is the sincerest form of flattery.......