Hi everyone,

I've been promising an update for awhile now, so thought I'd better soon get to it. Heather was supposed to come home last week, but she had a round of chemo on Wed. and the nausea hit her really hard. If we had a shorter drive home, she might have. But a 40 min. drive is too much when your stomach turns at the slightest movement. Even Zofran couldn't control it completely.

Anyway, she is finally scheduled to come home tomorrow. It has been quite an undertaking to get her home care coordinated. One of her oncologists said they don't normally send people in her condition home, but since her sister and I are with her 24/7 and do most of her care anyway, they felt we could handle it. She will have nurses coming in every day for awhile to help and to monitor the situation. She would probably have come home Monday, but it was delayed so she could get another tube placed. Her 3rd one!!! A "J" tube this time. It bypasses the stomach and goes directly into the jejunem, part of the small intestine.

Chemo treatments will be stretched out to once every 2 weeks and we will take her to the oncologists' office for those. She is still weak, but we have had her up walking the length of the hall and back. Pretty good, considering that the only moving she did for several weeks was to get up just enough to use the bedside commode.

She still has a very long road to recovery and there are some long term issues to deal with. The fistula on the side of her neck must connect directly to her throat, because when she had a swallowing test, everything she swallowed poured out the fistula. So she won't be able to take any food or drink (except water) orally for a long time. The fistula can be fixed surgically, but not until the tumors are gone. She also might have surgery to correct her spine this summer.

If bringing her home is successful, I will have a little more time and would be glad to answer any questions about her condition. I know some of this stuff, like the "J" tube, is not something most people would be familiar with. I know it was new to me.

We are very thankful that Heather is improving. Every extra day she has with us is precious. And the saying that there is always someone worse off than you is so true. Last week, a beautiful, kind and intelligent 16 year old girl in our area lost her battle with brain cancer. Such a terrible tragedy. Everyone, please try to be thankful for the time you have.

Rainbows & hugs,
Rosie

Rosie, thank you for the update. I have a round of hugs for you and yor family.

Your last sentence says it all.

Rosie, Thanks so much for the update on Heather. I'm glad to hear that she will finally be coming home soon - where I hope this will help speed up her recovery. My prayers are with you that she continues to make progress, and will get better each and every day. God bless.

Hi all,

I am so bummed out. I just got a call from Heather's sister at the hospital. It looks like Heather won't be coming home today after all. She woke up this morning with a sharp pain in the right side of her abdomen, approximately where the "J" tube was placed. She has increased swelling in her face. And now her left arm is also swollen! They are going to do some ultrasounds today to try to determine the cause. I'll keep you posted as time permits.

Rosie

Hi, Hope this continues to go well even with delay. Heather is in my prayers every night, right there with my family and friends who are having problems.Take care of yourself too.

Rosie
Thanks for th update. My thoughts and prayers are with you all.Diane

Hi again,

OK, it looks like Heather might be coming home tomorrow. The abdominal pain was probably because they didn't hook up a drainage bag after placing the new J-tube. She had a lot of residual fluid in her stomach which caused her quite a bit of discomfort. She still has some pain, but according to an ultrasound, everything is fine. If it doesn't clear up in a few days, we will have a different doctor check it.

The swelling in her arm is being caused by a small blood clot above her lung at the end of her PICC line. They are going to put a new PICC in her other arm and take this one out. Supposedly, when they pull the line out, the clot will break up and dissolve. They say this clot will not go to her lung. Only clots from the lower extremities travel to the lungs, not upper body clots. She will start taking lovenox again to prevent further clots.

They are putting her back on steroids for the swelling in her face. It is on her left side which is where most of the cancer is. Between the cancer, the chemo and the infection with the fistula, it just periodically swells. I will be keeping a close watch on it at home.

Rainbows & hugs,
Rosie

Hello,

Heather did come home on Thursday. The trip really wore her out and she slept most of the first couple days. We are busy trying to find space for and organize all the supplies. My living room looks like a hospital supply company, boxes and boxes full of syringes, meds, gauze pads, dressing and trach cleaning kits, pumps, tubing, saline flushes, etc., etc., etc. We are also learning how to use the morphine and TPN pumps, and how to give shots because the Lovenox can't be given IV.

So far, we have only had one major problem. Her brand new PICC line clogs really easily. It even gave the nurses at the hospital trouble on the first day it was put in. I had to call the home care nurse at 10 PM last night. What a trip! These nurses are not allowed to keep the anti-clogging agent on hand. She had to call the doc and get an order, then drive to the Home Infusion Pharmacy to pick it up ( a 1/2 hr drive), drive back, inject it in the line, then wait 1/2 hr to see if it worked. From the time I made the call for help, it took over 2 1/2 hrs til she got the line working. Thank god it worked because if it hadn't, Heather would be heading back to the hospital Monday for a new PICC line! We now double and triple flush the line before and after each use. At least it happened while the nurses were still doing the stuff. I would have felt terrible if it had been my fault. I guess Heather just got a fussy line. But what else isn't new!?! Nothing ever goes right the first time for her!!! She already had a Hickman that had to be removed because it leaked. This is her 2nd PICC line. She's on her 3rd feeding tube!

There is a bit of good news, though. The 3rd feeding tube, the J-tube, seems to be working. We have been giving meds through it just fine and have even been able to increase the amount of food given. Of course, we only started her at 20cc every 6 hours. That's only 4 tsps!!! It's hard to imagine that her stomach couldn't handle that tiny bit of food, but it couldn't. But the J-tube bypasses the stomach and goes directly into the small intestine. Too bad they didn't think of doing this several weeks ago. It could have made things so much easier for Heather. Oh well, at least it seems to be working now. Now I'm just hoping that the chemo treatment on Wed. goes well. Catch you all later!

Rainbows & hugs,
Rosie

Rosie,

Thank you for the Heather updates. You know you all are in our thoughts and prayers. Glad she is home now. That has to lessen some of the stress on her and the rest of the family.

Keep us posted and thanks for thinking of us, when you have much more importatnt things going on.

Dinah

Rosie, I have had several PICC lines, the first one ran well , the second clogged, I went to my local hospital which is only ten minutes away and the IV nurse there took care of it. My hospital called and made the arrangements for that. The Iv gals say the new prepared syringes only have 3 cc of Heprin and the saline the same.They think 5cc works better. I had to measure the Heprin myself from a bottle and did 5cc for the first PICC line and all was well even though you had to watch for air bubbles more and it was more of a pain to do. I ran antibiotics thru ever four hours. I stayed up late at nite and my husband did the morning one. I would sleep thru that one. If you are using 3 and you still have trouble ask about 5, I used for a week ,just used the prepared syringe and stopped second when I had flushed with 5. They have to order you more supplies, but if it helps??? Glad she got home!

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.......