Back home

Hi everybody - Tony here. We're all sitting in the family room right now watching some tennis, relaxing. Just before this, we all went outside to hang with the neighbors for a while for Halloween, catching up with each other and getting visits now and then from many boldly dressed but soft-spoken neighborhood kids.

We left the hospital to fly home around noon today, after meeting with both our nurse practitioner and Dr. McDermott. As always, Dad was diligently coordinating between Boston and Cincinnati to find the quickest and most expedient way to get along with treatment, which was no easy task considering all the strain we were under today and yesterday.

At this point it has to be said that the people at Beth Israel Deconess were all excellent - attentive, professional, compassionate ready with answers and always ready to help. And although we didn't leave in the best of circumstances, at least we feel like we've gotten the best help we can get, and thankfully Mom is returning in better condition than when she left on Sunday.

The flight was blessedly uneventful, and we arrived in Cincinnati greeted by Andrea's warm and loving smile. We all hugged and then were out and on our way back home, sweet home. Now we'll all be home together till Sunday.

On Friday we meet again with the doctors, and in the meantime we'll all work on getting Mom to move from smooth to more solid foods. Her appetite has been improving daily since we started in Boston, so we're hoping this keeps up on an upward trend. Thank you Wan, Mom enjoyed your ice cream tonight.

Thanks everybody for keeping us in your thoughts and prayers. Talk to you again soon.

Much love,

LJA&T

A Disappointing Change in Plans

The news from the CT scan was not good. Dr. McDermott came in this morning and explained that Linda's trouble with eating and nausea is likely due to the tumor in her abdomen pushing against her large intestines. He told us that this tumor, as well as the tumors in her lungs are growing much faster than anyone expected. For this reason, he recommended against continuing the IL-2 treatment. He said that even if effective, it might not act quickly enough and we would lose precious weeks waiting to see what would happen.

The other treatments, such as Sutent, can shrink the tumors and in some cases have worked for a couple of years, but do not have the chance of a permanent, long term solution that we were hoping to get from the IL-2. So for now, they recommended that we head back to Cincinnati and they will contact our oncologists there to work out an effective treatment plan as soon as possible. So we will return tomorrow.

This is all disappointing news, but we are not giving up, and we know you won't either. And we will need your support now more than ever.

Luv ya all,

Linda, Jim, Tony and Andrea

One Step Backward

Well, we made it to Boston last night just fine, and "checked in" to the hospital this morning. The surgeon even put the line in and everything was a go for the first injection at 3pm. But Linda started getting nauseous again around noon and everyone's antennae went up. Dr. McDermott felt it was unusual for her to still be nauseous after all this time, so he wanted Linda to get an abdominal xray just to see if there might be some sort of blockage in her digestive system. The xray didn't happen till 3:30, and it came back inconclusive, so now they want to do a CT scan. That won't get read until tomorrow morning, so that means no IL-2 tonight. Worst part is, Linda has to drink that awful Barium solution. The bottle is more than she's had to drink all day today, but she's being a trooper about it, as always.

The blood tests also showed a very low hemoglobin level. It's 6, and it was 8 when she left the hospital last time, and normal is more like 12. Linda's always been anemic, but this was really low. They feel this may also explain her fatigue, and they plan to give her blood when we get back after the CT scan. It would be great if that helped.

On the plus side, Tony's here! He arrived safely around 1:30, and has been running errands and taking care of Mom. Running errands is more complicated than it sounds. The apartment that Tony, Andrea and I will be alternating evenings in is part of the hospital arrangements, and because they are sometimes used by bone marrow transplant patients, there is nothing, nothing in the apartment. No sheets, no pillows, no shower curtains, not even shower curtain rings. So Tony was on a scavenger hunt. Fortunately there's a Bed, Bath and Beyond up the road, so we're all set for the week now.

So now we hope for the best tomorrow. I'm not sure how I'm going to get thru the week myself-- I've only got one fingernail left. There's no way it's going to last the rest of the week.

We'll let you know what we find out tomorrow.

No News is Good News

I said I'd check in so here I am. Eat, sleep; sleep, eat; sleep, sleep. We also walked halfway up the street this morning, a new record since we got home last week. Everything we do right now is focussed on getting on the plane Sunday afternoon. We're both a little nervous and hope that nothing comes up to change our plans. Also, once we get there we'll get to see Tony and Andrea! Please keep your fingers crossed with us. Those of you who are flexible, toes too.

Luv ya,

Linda and Jim

Wednesday Night

Hi everybody,

Jim here. Sorry for not posting recently, but there's not a lot to report right now. Linda spends most of her time sleeping and, thank goodness, eating. Today was the second day in a row that she ate 3 meals. The biggest problem right now is her fever, which is not that uncommon with cancer. It's mostly low grade, but once the Tylenol wears off it can go up to 101. We hope to start reducing some of the meds (nausea, heartburn, decongestant, diarrhea) as the week progresses, with the hope that we can be down to just Tylenol by the time we leave for Boston. Patty, if you have any suggestions don't be shy. I'll probably check in again Friday night.

Night all, Luv ya,

Linda and Jim

One Step Forward...

Hi, everyone! It's Linda this time. I thought this blog would be written from Boston this evening, but that is not the case. When we consulted on the phone this morning with Virginia, the nurse practitioner, and told her of my condition at this point, she suggested that maybe we delay the next round for a week so that I could be in a stronger position when starting next Monday. If we just delayed it a day this week, it would cause their weekend staff to be off schedule. I was still feeling rather weak and tired this morning, so I agreed that delaying a week would give me a better chance all around for the next round of treatments.
Of course all this meant changing airplane and hotel reservations, both for us and the kids who were going to come in shifts this week. Jim has been so patient in doing all this. Thank goodness I have him to take care of all of the details!
So now I have a few days to stay home, rest, and try to EAT to get my strength back. I really haven't f
elt like eating anything this week, so now I'm hoping to enjoy the good meals in the refrigerator downstairs, made by wonderful friends and neighbors. As always, thanks for every act, whether small or large that any of you have done for our family. There's no thank you note big enough to include all of our appreciation and love.
Linda and Jim

Linda's Feeling Better

Alright, maybe not well enough to go zip lining, but better. Still very tired and not much of an appetite. She's getting around pretty well, and while no one is looking forward to doing this all again on Tuesday (we leave tomorrow), she is looking forward to getting it over with.

BTW, the picture is from our vacation to Alaska in July. Linda is about 100 feet in the air above the rain forest in Ketchekan, zipping between two trees about 300 yards apart. For those of you who didn't know, Linda is afraid of heights, so this was an especially big deal.

Wish us well on the trip. We'll be in touch, if not tomorrow then definitely Tuesday.

Love Ya,

Linda and Jim