The news is TERRIFIC!!

We just got back to the hotel from the doctor's office. Dr. Amin showed us the CT scans.  When we compared the old scan to the one from today, we could obviously see that the spots of melanoma have almost completely disappeared. The large spot that was >1cm initially was not even there! We are very very thankful. Dr. Amin said that normally about 50% of patients are still stable in 2 years. We talked about the fact that the statistics are still being made. They don't have long term data on the Ipi...the survival rates are still being made (and Bobby is making them)!

Bobby is very happy-and I'm sure will wake up feeling happier every day. It is overwhelming.  We are taking the kids out for lunch (not that we have a choice)--but we'll enjoy our lunch in Charlotte!

We don't always know why we are dealt bumps and curves in our lives but looking back, I can say that we are living life differently than we were 1, 2 or 3 years ago. We love more, laugh more, and pray more. For me (only)--I can say that I'm spending $$ LESS!

Celebrate TODAY and for tonight-have a nice dinner and celebrate with us! We'll be home tomorrow PM (maybe)!

We are still in the Dr office but GREAT NEWS! They can't even find most of the spots in his lungs!!The big one is GONE!Not much else 2 say-AMEN!

It is Tuesday and we're in Charlotte

Bobby, Julie, Dan and I came down to Charlotte on Sunday. The traffic was bad on the way down. We spent the day shopping and showing the kids around Charlotte yesterday. It is such a pretty city. The buildings are tall (I have pictures but can't add them from here) and the streets are clean. It has always been one of our favorite places. The last few days here have been especially nice because the city is virtually empty. Charlotte is full of business people and bankers. I don't think they have to work during the week between Christmas and New Year. The waitress last night said the hotel was booked at 19% capacity. I asked what it was generally and she said about 65-70%. For that reason, they had no dinner specials :( Usually, their special is a pasta dish with lots of garlic :)

Well, we are waiting while Bobby drinks his CT contrast. They started his IV without any problems. We noticed that the sky was crystal clear this morning, not a cloud to be found. I hope that is the theme of the day. We love you all and know that you are praying for the best. I'll post again later...

It is that time again

We're leaving for Charlotte today. Julie and Dan are going with us and we are leaving a day early to show them around the city. We just hope it is warmer there than it is here! Bobby's CT scans are Tuesday. We will keep you posted.

We hope everyone had a wonderful Christmas and are making big plans for a happy and HEALTHY New Year.

(Erma-don't forget to send me that address)
(Aunt Linda-the cake was delicious)

We had a great dinner!

I had to wait until after we ate (or were eatING) to get pictures. Aunt Rosie's Party Chicken was excellent. We love you Aunt Rosie & Uncle Ron-Thank you for taking the time to prepare and deliver a great meal for our family! I made Bobby strike a pose...to say THANKS!

A little post...

I hadn't thought about this until I made the last post but I have a few pictures that I'd like to put on the blog. I think you'll enjoy them (I hope you do). We had a great Thanksgiving! We felt blessed to be able to share it with family. Julie wanted to have Thanksgiving in Bobby's parents' new house. Bobby's mother took everything we needed down to the house so that we could prepare & eat our meal there. She worked very hard and it paid off because our Thanksgiving dinner was terrific. We had many things to be thankful for.

Yummm, we can't wait...

Our house is smelling quite terrific right now! Aunt Rosie made us dinner for tonight! Uncle Ron brought the entire meal over to us earlier. I put the chicken dish into the oven and it has been cooking (per Aunt Rosie's instructions) for the last 3 hours. The house is filling with yummy smells. We couldn't wait to eat the bread she baked-but I did save half of it for later. I had to have a slice and since it was already cut, I cut a few slices to send along with Bobby and Julie this afternoon. Lemon Poppy Seed Bread with a lemon glaze. I could skip the chicken and just eat bread tonight (I won't though). We are all starving and without Aunt Rosie's meal, we would have had leftover chicken salad & macaroni salad from last week.

THANK YOU AUNT ROSIE & UNCLE RON!!!

I'll let you know how dinner was after we've eaten. I'll bet that the FIRST thing Bobby says when he gets back home is how good the house smells...stay tuned!

Just a note...

Bobby talked to me tonight and he is concerned about any messages that may not be clear. (Hmmm, I remember doing this once before)... I told Bobby that I would send out a short message to make sure there are not any misunderstandings. I hope this makes sense...

We were told by the doctor that the tumors in Bobby's lungs appear to be smaller than they were 12 weeks ago. That's pretty clear to me (wink). This does not mean that he has been cured or that he is even "out of the woods" yet. It is perhaps a sign that the Ipilimumab is working. Melanoma is not something that is ever gone (permanently). I don't think we'll ever be able to erase this completely-but we'll pray that we can. We still need to wait for the official reading on the CT scan. The doctor reviewed the images with us just a few hours after the tests. Bobby says he'll feel better after the next set of scans at the end of December. We'll rejoice again if we continue to get good news!

I told Bobby that we CAN celebrate what we were told. We can celebrate and give thanks for ANY sign that things are better. It would be sad to have to wait for MORE signs, or better news, or bigger changes before we give thanks for even the smallest improvement. The signs we were given were very positive, but in no means are the end of this journey. Still, we give thanks to you and to God for this news-and for the gift of having YOU to share it with!

Encouraging news

Dr. Amin shows Bobby the results of the CT scans today.

We are 12 weeks into the clinical trial for the Ipilimumab. Bobby had a CT scan today to look at the melanoma in his lungs. They look at the changes between the same spots from the original scan and compare them to the scan he had today. I can't say for sure that they looked at ALL of the tumors, but the ones they compared were smaller today. Some weren't even visible on today's scan. Dr. Amin is pointing to one of the spots that isn't there on the new scan. Bobby is still digesting the news...it is a miracle. He is very happy but wants to be very cautious about the future. Melanoma is still a horrible thing-still the percentages of success are small. We definitely want to celebrate this blessing. We are very thankful. Bobby is feeling very well (in relation to side effects...) He is pretty tired(a common side effect) but we try to catch a nap (or two). He had developed some sore spots in his mouth which have gone away. It had been hard for him to eat. He had actually gained a pound this week so, his appetite has definitely NOT suffered. Maybe he had lost a pound when his mouth was sore but he is making up for it! Most nights don't go by without his huge bowl of ice cream, chocolate, and whipped cream! He hasn't had problems with other potential side effects. He's doing so well & we are all so proud of him. Don't stop praying-and we won't stop thanking. Although I won't stop asking for continued progress, I'm going to take a break and do lots of thanking first. We will be back in 4 weeks for another CT scan. We would expect that the Ipi continues to work and Bobby's body continues to keep the cancer away! I don't know what questions to answer-so if you have any questions, please ask and I'll try to answer them. I think you can leave comments? If not, send us an email. We talk about all of the support, friends, prayers, and meals that we have received. We wouldn't be where we are today without each of you! You are each a blessing in our lives. I also want to thank our parents & our kids--we can only imagine what they have gone through & continue to offer so that all of this can happen. Bobby and I are able to support each other and be together because of the support we have at home-we love you guys! (This is from Julie)-Julie Harsh would like to thank everyone for the support and prayers. You guys really helped us and now we are beginning to see the results of so much faith and support. No one really knows how much they do to help someone, but right now I wish they could because alot of people would feel great right now. Thank you everyone for everything!

I will add more info later but the new is very good. The CT scans show improvement. Some of the tumors are smaller-some are gone & nothing new!

Tuesday has arrived

Bobby has been nervously awaiting today's arrival. We are in Charlotte. We have to be at the hospital early. They are doing CT scans to see if the Ipi drug is working. We can only pray that we get good news today. It is quite a day-the fate of one's life will be in these test results. He is very positive & is hoping for good news. He said that either way, he will be OK with the results but that's not possible. I think he'll have a very hard time if the scans don't show improvement. I'll keep you posted. We should know more by this afternoon. Thanks for the prayers.

New Message

Things are looking good this week! We made it to Charlotte safely. It rained the whole way. Feeling blah but much better than the last 3 days! It will pass.

Pictures from 3 weeks ago...

I have some pictures I wanted to put on the blog. The pics are from our trip to Charlotte 3 weeks ago. We drove home on the Blue Ridge Parkway. There are also some pictures of Bobby getting his medication at the hospital. It is pretty simple (so the pictures aren't very exciting). Bobby is doing well. He says he's tired, feels a little run down. The sores in his mouth have improved quite a bit. I've noticed that his appetite has decreased a little. He still has his quart of ice cream every night at bedtime. Whipped cream, chocolate...the works! He's been busy all week. He changed the brakes and a few other ?? things on my van. Oh-he says he "Changed the transmission control module." He balanced the tires on his truck, got a load of wood...I don't know but he's been busy at home all week. He's driving me crazy! I can't get anything done when he is home-and he is always home. Usually, when we are off work together, we spend the time together-not doing the piles of work that are here. Well, if we are both home...I have to get into the routine of being able to get my stuff done without distraction. We are enjoying the time together-even if the laundry is still in piles!

We're doing well

Nothing much going on-which is always good. Bobby had a routine appointment with the dermatologist on Tuesday. It went well. He didn't find anything suspicious-nothing new. Bobby goes every 3 months for an inspection-he passed! I like to celebrate even the routine visits-they might seem minor (especially to Bobby) but it is a blessing for ANY exam/test/scan to come back normal! Yipee! That gives us something to celebrate-at least every 3 months!

Bobby has been busy. He's been working on fixing the water pump in the backhoe? at his father's house. He said he got the water pump all put back together & installed it back on the backhoe. It may be a loader...they're all the same to me. So he puts it all back together and starts filling the radiator with water. The water he poured into the radiator just ran right out. Apparently, it was the radiator that was in need of repair-not so much the water pump! Sigh :)

Today is Dan's 14th birthday. He is excited. We talked on the way to school this morning that he will be going to high school next year. We had a teacher's conference on Wednesday. They said he is doing well. Mr. King, Dan's math teacher said that Dan surprises him all the time in class. He said he will put a problem up on the board and show the kids how to solve it. Dan will show the teacher his way of solving it-a way the teacher never thought of.

That's all for now, we have a busy day...

Update

I wanted to post an update to say hello to everyone (and there are so, so many friends & family out there). Hello, hello! Bobby is doing great! He is progressing through the clinical trial as expected-maybe even better than expected. He had developed some mouth ulcers which are now healing. He was having trouble eating-and eating seemed to make it worse. Now that his mouth is healing and there is less pain, he is eating better. One of the biggest side-effects of the Ipi is fatigue. Bobby has been tired and finds that if he can grab a few cat naps during the day it helps out. The Ipi can also cause diarrhea, which can be severe. We can be thankful that he hasn't had a problem with diarrhea. That would make anyone miserable. I think his spirits are great. He has definitely moved into a different phase of acceptance regarding the cancer. He is treating himself better, and is more willing to listen to his body-working with it and not trying to be Superman. This is all good. His mood is great, he is enjoying doing the things he/we love to do. He is spending time at home, working on projects, helping the kids with their (many) projects, and helping me with the never-ending housework. On the way to & from Charlotte last week, we drove a good portion of the Blue Ridge Parkway. The trees were at their peak and the weather was beautiful. Bobby didn't seem to mind that the 6 hour trip took 9 hours. We've heard some concerns that Bobby is sitting around the house feeling depressed, sad, and that he is just moping around (not to be confused with mopping-which is encouraged). The concern is appreciated & we know that the potential is there. I think the worst part is the guilt Bobby feels because of things he is hearing. He's not being lazy. He's not giving up or just laying around. Bobby is doing what he should be doing. He is enjoying life, living each day(at an enjoyable pace) and giving to himself the time he has given to all of us. If he wants to watch a movie or wash his truck--he can. Even with "nothing to do" his list is long and every day is filled with projects, errands, and a list of never-ending chores. I'm working more which takes time away from running kids around & housework. It is helpful to have him around. Bobby is enjoying his time that he has-to spend with the kids, to mow the grass, to help his family with projects-whatever, whatever he wants. Yes, he is tired. It is to be expected-it is normal, it is very common with immunotherapy. His body is working hard, the medicine is making it work harder. Bobby is never down in the dumps, he is hopeful, he is scared-worried what the future holds. He's being a great father, a great husband, and is taking time to smell the roses. I think he's doing what every person isn't doing-living the best life he can. We have one more dose of Ipi...in 2 weeks. Then, 2 weeks after that we go back for scans in NC. What we want is to see no disease progression. If there has been no change or they see a decrease in the size of the tumors, that means the Ipi has been working. Then, we will continue in the clinical trial and he will continue to get the drug but not as often as he is getting it now. Instead of every 3 weeks, I think it will go to every 12 weeks. We knew the beginning of the trial would mean many trips to NC. We're learning the drive and enjoying the time alone together. The kids are holding their own. We're very lucky to have them be able to help out when we need them. We're lucky to have such great support. Thank you!

Potty train your children & teach them to walk to the bathroom-before they are 30 & expect a nurse to do it.

Interesting Stuff

This article was from www.about.com

Ipilimumab is the drug that Bobby is currently getting. The clinical trial that is mentioned in this article is not the one Bobby is enrolled in. There are many options out there, but it is very hard to get accepted. One person mentioned that, "in one of these trials only 90 patients on the entire planet would be accepted." In Bobby's trial, it was 70.

Top 5 Treatments for Melanoma

Treatment of advanced (stage III and IV) melanoma is in desperate need of some good news. Although the incidence of melanoma is increasing by a whopping 3 to 5% per year in the United States, current therapies don't significantly increase survival in most patients and no new first-line medicines have been approved in over 10 years.

Clinical trials are the best hope for a long-lasting reduction or elimination of metastatic melanoma (called a "durable response" or "complete response" by doctors). The US National Institutes of Health lists 27 late-stage (phase III) clinical trials currently recruiting patients with melanoma. Many of the trials are testing new combinations of existing drugs, new ways to administer them, or new surgical procedures, but some are investigating brand new drugs. The most promising are the following:

Ipilimumab (MDX-010, MDX-101, or BMS-734016) - Ipilimumab is an antibody that activates the body's immune system to fight melanoma by inhibiting the CTLA-412 molecule. Three previous phase II clinical trials have shown that treatment with ipilimumab results in a one-year survival rate of 47% to 51% for people with stage III or IV melanoma, which is almost double the average. (Bobby is stage IV) Made by Medarex and Bristol-Myers Squibb. The trial that Bobby is in has 2 parts. Half of the patients are getting 'ipi" made by Medarex and the other half are getting the same drug made by Bristol-Myers (BMS). Since they expect FDA approval of this drug, Medarex could not keep up with the production. Because BMS is larger, and has more $$$, they are running the trial to show that their "ipi" is equivalent to the Medarex drug.

Allovectin-7 - This novel gene therapy is injected directly into the tumors of patients with stage III or IV disease, which then alerts the body's own immune system to attack the tumor. Earlier trials of Allovectin alone showed that tumors in 4% to 9% of patients responded to the therapy. The new trial is comparing Allovectin-7 to the standard chemotherapy treatment, either dacarbazine or temzolomide.

Oblimersen (Genasense) - Genasense is a unique inhibitor of Bcl-2, a protein made by cancer cells that is thought to block chemotherapy-induced cell death (called "apoptosis"). So by reducing the amount of Bcl-2 in cancer cells, Genasense may enhance the effectiveness of current anticancer treatment. Previous studies demonstrated that Genasense combined with the chemotherapy drug dacarbazine tripled response rate and significantly increased overall survival compared to dacarbazine alone.

MVax - MVax is a melanoma vaccine prepared from the patient's own cancer cells. Several studies have shown that MVax followed by interleukin-210 can lead to a complete response in up to 13% of patients, double that of interleukin-2 alone. MVax is also effective in patients with stage III melanoma when given post-surgery: it doubled the 5-year survival rate compared to surgery alone.

OncoVEXGM-CSF - OncoVEXGM-CSF is a vaccine that works by spreading within tumors and causing the death of cancer cells while stimulating the immune system to destroy metastatic tumors. Previous results from 50 patients with inoperable stage IIIc/IV melanoma demonstrated that 28% of patients responded, including 12% with a complete response. The new trial is enrolling patients with previously treated but inoperable stage IIIb, IIIc or IV melanoma and is designed to compare OncoVEXGM-CSF to a naturally-occurring substance in the body called a "granulocyte monocyte colony stimulating factor" (GM-CSF), which increases white blood cells.

Why Participate in Clinical Trials
Those who take part in clinical trials get access to the latest treatments that are often not available anywhere else. These treatments may be better than the standard of care and may offer the only hope for those with advanced disease. Simply put, participation in clinical trials by patients is the only way research will advance toward an eventual cure for melanoma.

Source: ClinicalTrials.gov. US National Institutes of Health. 10 February 2009.

©2009 About.com, Inc., a part of The New York Times Company. All rights reserved.

www.GlennasFund.org

All is well. Bobby is getting dose now. He is also eating his lunch-Turkey & Cheese, chips, pasta salad, & fruit cocktail. ChickFilA for b-fast.

Interesting information about another therapy to treat melanoma-this is not what Bobby is getting

Plexxikon Announces First Patient Dosed In First Of Two Pivotal Trials Of PLX4032 For Metastatic Melanoma

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Today is Bobby's Birthday

I haven't posted in a while. We've been doing pretty well so there hasn't been much to post. I've been working more than usual (someone has to) so I haven't had spare time. Too much to do...for everyone!

Bobby was a little sad this morning. Birthdays should be celebrations...he has other things to think about. One always wonders if this will be the last...or one of just a few to celebrate. I know it is hard and he thinks about it often. We keep the spirits up and his mind on other things.

Bobby bought me a dozen roses and a big huge bag of Peanut M&Ms last night...my favorite. He has been working on many projects around the house. Physically, he feels good. They wouldn't expect any symptoms from the medicine until after the 2nd dose (which is Tuesday). Bobby & Jim went to Charlotte on Tuesday (this week). Bobby enjoyed the time with Jim (6 hours each way). It was great that Jim could go along with him. 2 weeks ago, Bobby and I went to Charlotte. We had to stay for 11 days. I left early to bring Dan home. Dan had gotten sick with the flu just before we had to leave. We decided it was best to take him along and he missed a week of school. We worked hard to keep his germs away from Bobby-and it worked. It was hard for Dan to be stuck in the camper with us although we tried to do little things along the way.

We hope everyone has been well. It is hard to keep up with everyone and what is going on with you and your lives. We think and talk about everyone...and who is doing what & where...and wondering how life is for our friends (and family).

Tonight, for Bobby's birthday, we are going out to dinner with Jim & his family, Bobby's parents, and Bobby & the kids & me. It will be nice to have a family meal. I will get a cake and I ordered some balloons. Things to embarrass the Birthday Boy! We'll keep you posted of anything new...and I'll try to keep up with everyone. Love to all!

Possible Melanoma Treatment

Possible Melanoma Treatment

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This would likely be the next step in treatment for Bobby. This is the treatment we had expected to be next before they sent us to Charlotte for the Ipi trial. Bobby is coming home tomorrow (today) :) and we will go back down on Monday...and next Monday. Thank you everyone for all of the prayers & support!

Beach Vacations May Put Kids at Risk

Beach Vacations May Put Kids at Risk

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Bobby is at the lab(in Charlotte) getting his last blood draw for this week. He's doing well & will drive home tomorrow.Dan&Mom came home Sunday.

In Thomasville, NC . . . Need new furniture! Wish I had time for shopping!

Day 2...Lab work drawn at 12:02 on the dot. Had nice breakfast at Cracker Barrell. Thinking about a nap...then shopping.

First Dose..

Bobby got his first dose at noon today. Everything went well. Bobby was worried about the medication & he said he feels relieved that the beginning is behind him. There are no side effects to deal with from the drug being infused (no rigors or pain). There can be side effects which are mostly seen after the 2nd dose. They are often subtle but important (fatigue, rash, diarrhea, or headache...) Bobby was given a list of things to watch for.

So, things are going fine. Bobby has to get blood drawn at noon for the next 3 days. This is in addition to the seven times they took blood today! We are all tired...ready for bed. Thank you for all of the messages & prayers!

They hung the Ipi at 12. Working on keeping spirits up...he's doing well. IVs started without a problem. He ate nice lunch.He's causin RN issues!

Leaving for 12 days in NC. Bobby's first dose is tomorrow a.m. We are driving separately-Bobby has camper...& Dan!! ?? I will post more tonight.

Facebook, Twitter Revolutionizing How Parents Stalk Their College-Aged Kids

OK..this is hilarious

Breast tumour drug could treat many skin cancer cases - Times Online

Breast tumour drug could treat many skin cancer cases - Times Online

Update

Hello everyone! We've been busy. We went to Charlotte for appointments on Wednesday. Bobby had to have a current MRI, CT scan, lab work, and physical that was within 4 weeks of starting the trial. It is planned to start on the 15th. The doctor saw Bobby yesterday and all of the scans look good. There is the one spot that is large enough to be eligible for the clinical trial. They found nothing new-which is great.
Bobby is feeling fine & doing well. He is a little tired today-but it was a long trip to Charlotte. It takes about 7 hours to get there. Bobby discovered a water leak in our basement last night. We spent the day sopping up water. It had run down over all of our stuff we store in the basement. Boxes and boxes to dry or repack... Luckily, we keep most of the stuff in plastic containers. All of the cardboard boxes were soaked and falling apart. Yuck!I found two newborn kittens on our deck Sunday evening. The mother wanted nothing to do with them. Of course, I couldn't leave them out there-they were crying really loudly. Soooo, I've been hand feeding these two tiny babies since Monday. Kittens this size (with no mother) don't usually survive. I'm keeping my fingers crossed. We certainly don't need any more kittens, but it was very sad to find them without a mother. The babies rode along with us to Charlotte. They need fed every 2-3 hours. So far, they are doing very well. We have another cat that is very pregnant. My hope is that after she delivers her kittens, we can give her my other two (don't tell her). She adopted 3 the last time that weren't hers. Thank you Jeb & Danielle for adopting them. I was thinking that I need to start a shelter-and get them away from my house. Well, Bobby just brought me dinner. Grilled chicken breasts, asparagus, & pasta. I might just eat it and fall asleep. We don't EVER eat dinner in bed!

Changes seem to work out for the better

We received a call on Friday around 5PM from North Carolina. Due to an overwhelming need for patients to get into this clinical trial, they moved Bobby's start date to Sept. 15. We also decided to change the dates of the tests from this coming Tuesday to the 26th. We had planned to drive down Monday & return Tuesday night late so we were back before school starts (Wednesday). Now, we won't have to drive back late & we'll still be home for Wednesday. Also, since his start date was changed, Julie will be able to go to her horse show that first weekend in September. She hasn't shown her horse all season (she gave up show season so that the family could take "The Big Trip!") There is one show left--and we were going to have to miss it to be in NC. Everything is working out very well.

The first question we asked was, "Why was Bobby bumped back 2 weeks-instead of another patient." They were very nice and said that they (doctor & staff) had discussed this issue prior to moving the dates. She said that, in the time since we got into the trial, other patients have come in that are needing in this trial due to severe situations. The doctor felt that Bobby's disease progression was slow and that 2 weeks was not an issue. Unfortunately, there are patients that are far worse. Bobby agreed that 1)as long as he would still be guaranteed a spot in the trial & 2) if it might help someone in greater need, he was also comfortable waiting for 2 weeks.

Things we haven't even asked for are getting taken care of for us.

Bobby surprised me with a Corel Photoshop program for my new laptop-with which he also surprised me!

Ok...here is where we are now

We got a call from the doctor in North Carolina yesterday. The board of physicians & researchers met on Monday to discuss cases for the clinical trial. Although(last week) the doctor had felt some of the melanoma spots had decreased or stayed the same, they were able to find that one spot in his right lung that was greater than 1cm. Having had everything decrease would have been great but again, we are looking at the positive side of this...which is: 1) No more IL-2 & 2) The opportunity to receive this drug in the clinical trial.

**We pray for healing, but as we've been shown, we know not what The Plan holds for us**

So, here is what we expect will happen. At the beginning of next week, Bobby needs to be in NC for new CT & MRI scans, blood work, and tests required to start the clinical trial. Then, perhaps around 8/31 or the following week, we will return to NC for the start of the trial. At first, the time spent in NC will be much greater than it will require as the trial progresses. At first, it will require about a week of staying there and then returning every 3 weeks for a few months. As time goes on, the frequency that the drug is given spaces out--and we'll be glad for that. School starts next week-great timing...what ever happened to school starting the day after Labor Day? Bummer, it is right in the middle of Summer! I'll post more tomorrow or Friday.please email any questions you have, I'll be sure to answer them--I'm not sure how detailed to get or what I might be missing! It has taken me all day to get this posted online.

Researchers Shut Off Immune Cell Inhibition, Causing Tumor Shrinkage and Autoimmunity in Patients With Metastatic Melanoma

This article is not very current but it does do a nice job of describing the aspects of the clinical trial in NC. Monday is coming...and is the day the doctors in NC will review everything and decide what to do.

CLICK HERE for the article

OK... *The purpose of today's visit was to try to get into this clinical trial...

So, Dr.Amin compared dot for dot on scans of Bobby's lungs & says he CAN'T say that FOR ALL MEASURABLE PURPOSES he sees much growth of cancer!
Dr.Amin could not find a spot big enough to GUARANTEE a spot in this trial. He feels that PERHAPS the IL-2 was working by not letting it grow.
If the IL-2 is working, we have to look at the risks of the cl.trial vs. more IL2 (Bobby said he'd suck it up if its working!)
They will still proceed with cl.trial process.He may not get into trial BECAUSE HE ISNT BAD ENOUGH-which is certainly great news!

So this is very good news (sorry to spread via mobile) but the world was waiting. Celebrate & give thanks with us. WEAR SUNBLOCK!

We won't hear decision until next week as Dr. Amin wants to continue to review and consult with other doctors.

We are on our way to the appointment in Charlotte. We drove down yesterday(7hrs). We e have been treated with Southern Hospitality!

Clinical Trial Information-The study drug

I was able to obtain some more information today--I spoke to Bobby's doctor at NIH and also in North Carolina. The doctors have been very helpful and very willing to answer all of our questions. There isn't much information on the clinical trial but what I could find is HERE. It doesn't go into much detail (not that we'd know much more if it did). I found a few links that might be helpful...

Clinical Trial Information
Ipilimumab Information

Please send any questions our way and if we don't know, we'll ask the doctors. We can figure it out together!

Part 2 from Thursday's Visit

OK, so the majority of information is in the post below this. I didn't have time to post everything else after we got home...so here it is.

The doctor was pleased that the tumors in Bobby's lungs haven't shown much progression. He said that (not so) "unfortunately" the tumors are SO SMALL that they can not do a biopsy to get a piece of them. They need to have a piece of those tumors to be able to build the correct receptors and grow them in the lab. I think that if we can set our goal to keep those tumors SO SMALL that they can never get to them--we're set!

The place with the best clinical trial is probably in Charlotte, NC. We have a call in to the doctor there. The same trial is in NYC but we think NC would be easier. NIH is not doing this type of work right now. We're not sure if the trial is open for patients yet...so I don't have much information on it. NIH said to try this other clinical trial which is much safer than wiping out his immune system. We agree.

So, that is all we know until we get Cl. Trial information. Bobby & I are happy...even since last night, I can tell that he is realizing slowly what we learned yesterday. He was so worried about the scans showing something new. The doctor really made him feel better about the chances of that happening...and a plan if it does. So, Bobby is making plans to go back to work which will do him good. I hope to hear from NC today..I'll call again now and leave ANOTHER message!

OK...we know everyone is waiting!

Well, today's visit was very good. I have facts-which are good and I have a little information on what the plan is. I'll have more information on future treatment when we find out more. Apparently we each heard the doctor say different things. I'll just post what I thought the doctor said. Then, if HE is right--I'll bow out gracefully!

The results of the testing from last week were great. It showed that there was nothing new and only a tiny amount of growth of the lung tumors. All of this is great news. This is what we've been praying for.

The only thing we don't have answers to is WHAT'S NEXT. NIH is not feeling that they are the best place for him right now. They are suggesting we contact doctors in North Carolina where there is a clinical trial that might be best. I don't have all of the information on this so I'll post that when I get it.

Bobby plans to return to work and is still absorbing the good news. I have to post this and will fill in more later (after we play parent taxi)...but this should make everyone feel better.

No Bad News is good! Its complicated (the plan) but his scans were good (only minimal growth in lungs). NOTHING NEW! I'll put more on when we get

Today is the day we've been waiting for-and not looking forward to. We are getting ready to leave to go to NCI. We are both nervous. They will give us results of the MRI, CT, & blood work he had done last week. It has been a long week. We're praying for good-no, GREAT news today. And, thanks because we know you are too.

Reading Material...Information from NCI (NIH)

Perhaps the most extreme form of experimental immunotherapy is adoptive cell transfer therapy. This treatment strategy, devised by Dr. Rosenberg and his colleagues at the NCI, involves removing the natural tumor-fighting T cells from the patient’s bloodstream, expanding their numbers in culture dishes, and then re-infusing them into the patient. The cells can also be engineered to become better tumor killers while outside the body.

For the re-infused cells to take hold, however, the patient’s own immune system is first wiped out using radiation, which may leave the patient temporarily vulnerable to infection. Dr. Rosenberg is hopeful about the benefits of his protocol. “Half the patients with metastatic melanoma will experience cancer regression with this therapy,” he says.

Appointments...

We called NIH yesterday and will go down on Thursday for a day of testing. This will include blood work, CAT scan, and an MRI. Then, a week later, we will go back down for Bobby's visit with the doctors. They will give us the information about what's next at that 2nd visit. We won't know until then when the next step will begin. We'll pass on what we know, when we know it.

P.S. Does the misery of raising teens mysteriously disappear when they turn 20? Maybe we go back to the "Terrible Twos"--2, 20?
Or, perhaps the Terrible Twos is a 20 year long period from 2 to 22!

oops...Sorry!

YES, THEY ARE HOME! We've been very busy. Bobby and the kids got home around 5 on Thursday. We were busy unloading & unpacking on Thursday, Donna worked on Friday--and today is Saturday. We've been spending alot of time together & forgot to let everyone on the blog know that they made it home safely. The trip started on June 11th (Lindsey's birthday) and ended on July 9th. Other than the many attacks from hailstorms and a blown tire on the camper, everything went smoothly and we were blessed with a terrific trip. The kids were (mostly) very well behaved...not that they ever aren't. We would have stayed out there longer if we had unlimited time (and $$) to spend. The mattress in the camper was starting to get a little uncomfortable and the kids were tired of sleeping in their sleeping bags/bunks. Other than getting home to the kitties, having your own bed, shower, & toilet can't be described. We aren't complaining though because it was great having the camper and not having to stay in hotels & use public restrooms! Taking the camper along was a great benefit. We planned on "roughing it" a bit more than we did, but for 5 people to stick together like we did was enough to expect. Bobby had said that we were fortunate to be able to stay in all of the neat places we stayed. Although the campground wasn't great, it was nice to be able to stay right in the park at Yellowstone-if you don't mind bears.

Maybe I'll try to post more pictures tonight while they are all at the tractor pull. Bobby said that there weren't many pictures taken after I left...and I haven't looked to see what they brought back. Stay tuned ...

P.S. Bobby is feeling good. (Which is really all you wanted to know about anyway!) He is anxious to see what NIH/NCI has in store for him--and not really looking forward to it. He was glad to get the camper back & unhooked. It must have been a load off his back--which was starting to cause him pain. Changing the blown tire caused misery for his back. Other than that, he is doing great. We'll call NIH on Monday to set up an appointment and see what to expect next.

Almost home!

This is a map of the places where Bobby's cell phone has been located. Last night was the final night of the journey. They will all sleep well tonight! There is a spot on the map at our house...and then the trail heads NW into Pennsylvania...Ohio...and west. The second map is all of the locations where we've been. Each spot is where we were when the phone was located by GPS.
Today, as they head north from Virginia, they will complete the loop. EVERYONE will be glad to get home. I haven't posted much since I got home because I don't have the pictures that they are taking. I will have tons of pictures to sort through (at least that is what I'm hoping) when they get home. Pictures, laundry, food, souvenirs, and rocks. All of that STUFF in the camper will have to find a home inside the house. UGH!!! I think I would be happy moving OUT of the house...and just live IN the camper. It is so easy. Bobby is tired, and anxious to get home...he sounds a little tired and says it seems like it is taking forever to get home. Tennessee was long and Virginia is always a drag. We have always called it "Dan's Favorite State." When he was younger and we drove to Florida, he started the trip by asking "Are we there yet?" Our answer for hours was, "No, Dan, we are still in Virginia!" I know it seemed like days. They will be anxious to get home today and Virginia will seem like it never ends.

Video of our 2nd dose of HAIL

Hail at Hart City Ranch, Rapid City, SD

View of Kennecott Copper Mine from the top of Butterfield Canyon Road

OK-this is the video that I was talking about. I will try to straighten things out on the blog--with which video goes with which title. There is a Hail video and a Copper Mine video. This is the Copper Mine video-from the top of a ridge that we drove for miles to get to the top of. The following day, we visited the mine from the Visitor's Center. It was a little more safe.

Aunt Tracy found him!

Jim & Tracy, Katie, CJ & Robert watched 3 of our cats for us for 3 weeks while we were away from home. They graciously took Ditto, Lexi, & Maybelline into their home. These are the 3 cats that we felt wouldn't do well if left at home. Lexi gets medicine twice a day for seizures. They are all spoiled and needed TLC. We were a bit worried about the mixing of two family's array of pets. Our cats would have to learn to live with the 2 cats & a dog that already live in the J&T Harsh household. Everything seemed to be going well and the B&D Harsh cats were dealing with the change...UNTIL Ditto disappeared! He was gone for almost a week. We got a call from Jim that he was missing and they were in the process of looking for The Ditto. They looked and looked and looked-NO Ditto.

Donna came home from Colorado on June 30th, leaving Bobby & the kids with the camper and another week of travel. After arriving home, she went over to pick up Lexi & Maybelline. They were happy and didn't seem to care if they stayed or came home. Still NO Ditto. The J&T Harsh family felt VERY bad that they misplaced Donna's favorite cat. Donna says that he isn't HER favorite cat but Donna is The Ditto's favorite person. The Ditto had even started to bond with Tracy before he vanished.

Donna brought Lexi & Maybelline home and settled them back into their own house. No Ditto. Then, at about 11PM the same night, Jim called to say that Mam & Tracy had found The Ditto. He had been hiding under a dresser behind a spot that kept him out of view. Even looking under the dresser, you couldn't see the fat cat.

Everyone was happy that The Ditto was found. Tracy was most happy--until the dumb cat went to the bathroom (x2) on the bed! DUMB DITTO! The next day, after work, Donna picked up Ditto (after coaxing him out from under the dresser). Ditto is happy to be home.

THANK YOU JIM, TRACY, KATIE, CJ, & ROBERT!

The Ditto

I hope the link to the pictures is working for everyone

We arrived in Salt Lake City yesterday. This is our farthest point west. We will drive to Cove Fort tomorrow and then head toward Denver. Donna has to fly back home on June 30 to go back to work on July 1st. Then, Bobby and the kids will continue on their journey back east. It has been a wonderful trip so far. Yesterday, the kids got a little noisy in the back seat during a bad traffic time...things didn't go well. Other than that, we've been tolerating the drives and life together in the camper.

Again, Bobby and I want to thank everyone who made this trip possible. Our friends are working while we are gone, our supervisors allowed us to have the time off to spend together (we know during a highly desired vacation time), our family and neighbors are helping us with the house and cats..all things that needed to fall into place. THANK YOU SO VERY MUCH! We love you all.

Try the link for the pictures...it should work...and remember the newest pictures are toward the bottom! Enjoy. P.S. We have not had signal for about a week. Not at Yellowstone, The Grand Tetons...but we have it now in Salt Lake City.

CLICK HERE FOR PICTURES

The Pits...

...as if the pits from the hail weren't enough.

We left Fishing Bridge Campground today (YEAH) and headed for Teton RV Park & Resort (not YEAH!) We had 3 nights booked for this place...and quickly canceled the second two nights. First of all, Fishing Bridge-the only park in Yellowstone with full RV hookups. We would not recommend staying there. It was very crowded, very busy, and not at all anything except a parking lot for anyone needing to spend the night in Yellowstone. As far as Yellowstone goes, if you are taking an RV to Yellowstone and want a place with a drain, water, and electric, you have no choice (besides the lodges). ...to be continued (maybe in the morning) I've been doing laundry for the last 4 hours and it is time to run back....I'll post this in case I don't have signal all the way back in campground...be back soon

Another day behind us.Time is flying-one kid-fight at a time.We'll be out of Yellowstone tomorrow,heading to the Tetons:

We're heading for Yellowstone. (Fishing Bridge Campground) The Tetons are in the background. We're in Buffalo, Wyoming.

Link to the pictures so far...I'd like to add captions...

Posing for a pic

We drove all over the place today. There were a few tunnels, some neat hair-pin turns, and several overlooks to stop at to see all of the sights. I have more pictures to post...We saw Mt. Rushmore (again) and watched them light it up tonight. For dinner, we ate a a local restaurant that was recommended by the clerks & a customer in the grocery store. The food was good and the prices were reasonable. We're having a great time and want everyone to know that it took an act of God to get us all on this trip. Bobby's supervisors have been gracious by giving him the time he needed (he had it but just wanted to use it all at the same time). My (Donna) supervisors-Alice, & Alicia were very supportive of me taking this trip with my family. The chemo will start back up when we return--so being able to take the trip now was the only way it was going to happen...So, we are very thankful for our employers and their support to our cause. We love you all! This is a perfect time to be taking this trip. It seems to be just a week BEFORE tourist season starts. There are no lines, no waits...The shops are empty...but preparing for their busy Summer season. For us, that means we get to enjoy it all--in less time! Love & Thanks to everyone back home...we'll be back.

Well, I spoke too soon...

Julie buried her head in a pillow...These are pictures of the storm as we were approaching it...It didn't get any better.

Things WERE good. We drove through a nasty storm. I will post video, and pictures. We learned a hard lesson--we won't do that again. Bobby is quite upset-there are many areas of the truck that have nice dents from the hail. There was large hail for about 5 minutes--and as it was hitting us, we knew...and it was too late. It sounded like the truck was getting shot at with bullets. Once the hail started, it was too late. We will assess the damage in the daylight tomorrow. The camper did OK, it has a few dings but we heard of broken windows in vehicles from the same storm. I have Doppler Radar images showing the Tornado Vortex. Lindsey reports seeing the funnel and rotating winds as we were driving. The radar supports her sighting... So, for tonight...we are wiped out. The kids are pretty wound up...and Bobby is not a HAPPY CAMPER. Storm chasers we are NOT. I'll put video and pictures on when I get them uploaded...Will I ever get the kids to go to bed. We hear the coyote's howling in the fields outside the campground. We're told this is normal. I might just post all of the pictures and video to Google and add a link...I left the video on record while we were in the storm. Hopefully, I've captured some of the stress we sat through. Bobby needs a medal for driving us safely. He is the best!

Enroute to...Hart Ranch...Rapid City, SD.

This is Lego Land at the Mall of America

We didn't buy any Legos but Dan had alot of fun playing with their displays. You can build cars and contraptions and send them down a ramp. Dan had fun and had time to play. The girls were off...to Victoria's Secret, Hollister...and many other stores (that we also have at home). They did ride the neat roller coaster (I have neat video). We bought a few things--but nothing we didn't need. The mall is special but it has stores that we have at home too. (Our best purchase was the box of CINNABONS)...Mmmmmmmm!

We are waiting for Dan to finish at LEGOLAND...Mall of America, MN

Stay tuned...for

Saturday's Adventures from THE MALL OF AMERICA!!!

Welcome to Minnesota!

Welcome to Minnesota! Crossing the Mississippi. These little posts are from my cell phone. I had to give up my camera battery to Lindsey so she could take cool pictures. If you want to see the COOL STUFF, check out Lindsey's blog www.lindseyharsh.blogspot.com but I bet there won't be a huge amount of FAMILY pictures! I'll work on posting some more pictures. We've been mostly stuck in the truck since we left on the 10th at 6PM. We didn't want to leave home that late in the day but it took us that long to get ready & out--so we went ahead and left and drove to Washington, PA. The truck is pulling great & getting 10.4 miles/gallon! Bobby said its because of all the stuff I packed. BUT I PACKED LIGHT!!! He's the one that brought all the tools & extra stuff! Oh, wait--2 teenage girls...there must be 50lbs of products/plug in things with us! I can't complain--at least they are showering daily!

More soon...we found a neat place to stop every night so far...more on that when I have a few minutes...

Dad can't do ALL the driving! :-O

STRESS test results...

Cardiac Stress Test: NORMAL!!!
Vacation Stress Test: FAILING!!!

News from Baltimore-We know everyone is on edge...

We got a call from Dr. Sharfman just a few minutes ago. Not good news, but not all bad news...

The tumors in Bobby's lungs have grown slightly since his last scan in April. This means that the IL-2 did not work. We had hoped that the IL2 would stop or reverse growth of the cancer in his lungs. It works only 15-20% of the time. A good part of this news is that Bobby does not have to suffer through any more IL-2. He was not ever looking forward to more of that. It was nasty stuff! A few of the tumors have shown very slight growth, there were no new tumors. His liver looks good. So, although the IL-2 didn't work, there are still positives out of today's scan.

The great news is that Dr. Sharfman said that all of this mess about Bobby's heart and EKG is nothing. He knew about the EKG report while Bobby was at Hopkins and it was not of any concern. He was surprised the family doctor even got the report. He said to go ahead and get the stress test (tomorrow) because it can't hurt anything...he expects it to be normal. Bobby is relieved to hear that.

Dr. S will call NIH (National Cancer Institute) tomorrow to see about getting him back into another clinical trial. That process should be easy because we set everything up before we left NIH. The doctor at NIH has kept in contact with Bobby to check on his progress. I will email him tonight. I will try to post some information about what we think might be next (about the clinical trial) after I do some research.

Bobby is understandably upset. It would have really been great if this had worked. Although the IL-2 didn't work, there are still options AND we were given news today that is positive. Bobby says he felt all along that this wouldn't work. He is having a hard time trying to be positive. I'm giving him lots of things to look forward to.

We are still making plans to leave for the BIG TRIP. We will hopefully find out more about NIH's time frame and be able to plan the dates around the that. It will all work out-for one reason or another. It has been hard to make firm plans and I don't think today's news helped.

We appreciate everyone's thoughts and prayers that carried us through-we're not finished this battle yet! We have had someone bring meals to us every night for the last month. Thank you. We talked to so many people today (at Martin's) and the support Bobby & I have gotten is just amazing. People have been sending us supportive texts and messages all day. We love you guys!

Falling Behind...What could be next?

Planning...

(I also have more food pictures to post...all in time. I suppose.)

We kind of got the wind knocked out of our sails (again?) this week. Bobby went to his family doctor yesterday and the doctor had a report from Hopkins that said there were some changes on Bobby's EKG during this last round of IL-2. His doctor suspects that Bobby had a heart attack based on the EKG. They repeated the EKG at the doctor's office yesterday. Bobby was told by his doctor that the new EKG showed "something" but what they had seen at Hopkins wasn't there now. I called the oncologist's office and asked about the results of the EKG from Hopkins. In short, the EKG showed ischemic changes that occurred while Bobby was getting the IL-2. She felt that perhaps under normal conditions, his heart is happy-and under stress, ischemia develops. We're not sure what the end result revealed. Anyway, Bobby is scheduled for a stress test on Tuesday. STRESS TEST--Does he REALLY NEED A STRESS TEST? They are going to push him over the edge. The CAT scans are Monday (to see if the chemo is working). Then, a stress test on Tuesday to see if the chemo is causing cardiac problems. I asked Bobby which day he was most worried about. His cynical answer was, "Neither." I think he/we are beyond worry. We pray, we give thanks. What's left. WE are so thankful for the blessings we do have. So many of you have worked so hard and have been doing so much to bring us meals. I can't tell you how much that has helped us over the last few weeks. I haven't cooked a meal in a month. I've frozen enough to feed us for another month. The kids are happy--no Easy Mac, no cereal for dinner, no Hamburger Helper. They are eating HEALTHY--and happy! Thank you. I work tomorrow (Sunday) and there shouldn't be much to post--praying for NO CHEST PAIN is at the top of our list. I'll try to get more pictures posted. Hopefully, within the week, I'll be posting pictures from our TBA Traveling Blog! More on that soon...Mapping, Planning, Calculating...all with the hope of it falling into place

Tuesday-Yea!, A normal day...

Bobby got many things done at home today. He drove to the dump, worked outside and this evening, he and Julie washed our camper. That is hard work. They both came in very tired. Bobby is feeling much better. He does have skin that is peeling off of his hands & feet. His back is dry and peely. I rub lots of lotion into his skin but that just makes the skin less itchy and less dry.

Bobby talked with the Oncologist's office today. His next set of CAT Scans will be done in Baltimore on Monday. As I've posted before, the goal is to see that the IL-2 has slowed or reversed the growth of the tumors. We are praying about this. The results will determine the next course of treatment.
We will cross that bridge when we get there.

New stuff

I just added the pictures of some of the meals you have so graciously been bringing us. I'd love to post the recipes with the pictures. If you'd like to send me your recipes, I will be happy to post them.

Today is Julie's Birthday! She is 15! HAPPY BIRTHDAY JULIE! Russ Zullick coordinated plans with us for tonight's meal-Thanks for being so accommodating Russ!

Yesterday was Bobby's first day home that I had to work. The kids were here and were Daddysitting. I left instructions-nothing dangerous, and NO LADDERS. He did TRY (his words) to drive to the hardware store down the street. I reminded him that he wasn't going to drive until after his check up today. He said he realized that after he got in the truck and TRIED to drive. He listens about as well as the kids do. Julie was proud that she was able to keep him off of any ladders.

Bobby is doing really well today. He is 95% back to normal, with nausea being his biggest complaint. His appetite has improved and the fluid retention has improved. He isn't sleeping very well at night. We make up for that by taking naps during the day.
I better close out of this because we have to be in Baltimore in 1.5 hours! He has a check up...I can write more after that...be back later!

Saturday Morning/Afternoon

I had a few pictures on Bobby's cell phone from his most recent round of chemo. He was very helpful this morning and dug out his micro SD card so that I could pop it into the laptop and pull off the pictures.

Bobby is feeling much better today. Almost back to normal. He (and I) have been in bed most of the morning. He seems to be feeling less sick, less nauseated, and his mood is better. He was hungry for a huge piece of cake that Steph brought for dessert last night. I asked him to define "large piece" and his response was 8" x 8"! I told him that 8x8 is not a PIECE of cake--it IS a cake! I cut a piece that was about 4x6 and he ate 1/2 of that. He isn't needing the anti-nausea or other medicine so far today either. Each day is a better day than the previous one.

Here are some pictures from the last few days in the hospital...Maybe I'll just stick them in a slide show like I did the other ones. That seemed to work pretty well.

And, we're back home

I can't believe tomorrow is Friday already. We went to the hospital on Sunday afternoon and left on Thursday morning. Bobby says he doesn't remember any of it. By tomorrow, he won't remember today. His memory will improve soon. I reminded the kids that he is a little mixed-up. Not really confused-that sounds like he doesn't know where he is(and he does). He just doesn't quite have his facts straight. When the nurse brought his shot this morning, he told her he had already gotten it. I'm sure this surprised HER because she surely didn't remember having already given it to him! He didn't argue when I suggested that perhaps it was yesterday's shot that he remembered getting. This is all part of the IL2. He is still restless but is able to find things to do at home that he couldn't do in the hospital. He has mail to read, a stack of newspapers, his tools, the X-Box, and he can go outside for a change if he needs to. He was quite stir crazy being stuck in that hospital room. His skin is very dry and itchy. He had some areas on his hands and feet that were peeling from the first course of IL2. Those have just started to improve-just in time to start peeling again. He is soaking in some Aveeno right now. The IL2 is horrible while you are getting it but the side effects do go away over time.

I'm exhausted. I had taken a book and some magazines to help pass the time in the hospital. I didn't have time to even open my book and I read one magazine article to Bobby...Consumer Reports' Guide to wiper blades. If I had a few minutes when he was asleep, I took advantage of it and grabbed a nap myself. He was a handful this time because of the restlessness. As soon as I thought he was happy and settled, he'd be up and want a change. I sent Jim a picture of Bobby laying backwards in the bed...before I could send the picture, he had turned back around! During the first course of IL2, Bobby slept for about 3 days. He even slept on the way home-I remember. This time, he couldn't sleep (or thought he couldn't sleep) and didn't sleep on the way home--I remember because he complained enough about my driving (getting back to normal quickly).

Catherine Ann brought dinner over tonight. It was wonderful. The last thing I could have done tonight was cook. Bobby hasn't eaten much of anything for several days. He did eat chicken & rice tonight. He liked the chicken. Our thanks to the George family! We haven't had dessert yet--

Actually, I did have some chocolate chip cookies that Sandy Miner brought over last night. Although Bobby and I weren't here, the kids appreciated having dinner. Sandy brought baked ziti. It must have been good because it appears most of it has been eaten! Thanks Scott & Sandy! So, the cookies I had were last night's dessert--that means I can still have some of tonight's dessert!

Well, it is 8:30. It has taken me a few hours to write this between interruptions, laundry, unpacking and relaxing. I'm ready for bed. I don't know if I had written in the blog last time about the vivid dreams that the IL2 causes. It causes very vivid, bizzare dreams. Bobby calls them HI-DEFINITION dreams. He says they seem so real-but they are crazy & don't make much sense. He was talking about the cat tonight-he remembers something about Copper (the cat) and wind-energy. Maybe Copper knows what he is talking about?

So, the plan is: wait until the 2nd week of June and repeat the CAT scan. It will show if the IL-2 treatment has stopped or reversed the growth of the tumors in his lungs. If the IL-2 has worked, these cycles are repeated: 3&4, 5&6...I can't remember how many: 6? or 8? If we don't see any improvement from the IL-2, we will be given the option of more clinical trials.

Wednesday's Events

Bobby had another rough evening & night last night. The nausea continues although (until a few hours ago) he hasn't been vomiting as much. Around 10:00 this morning, the doctor's made rounds and he told them that he was seeing something orange in his vision. Just like the course before, this is a reason to stop the IL-2. It was wonderful that he started feeling better very quickly. Bobby was soon sitting up, chatting, holding a nice conversation with the nurse. The nurse found that his Hickman catheter (IV in his upper chest) had been tugged on and had gotten pulled out of place. The amount it moved is about 1/8" but that was enough for the cuff to come out. The line can't stay that way although they are able to continue to use it until it gets removed just before we go home. I expect that we will go home tomorrow morning. I will promise Bobby that if he stays tonight, I will have him out bright and early. He'd like to go home tonight, but he doesn't realize how much he is still pretty sick. There is still some confusion, and he needs reminded that even though he thinks and feels good--that changes in a second and he is back in bed with chills, vomiting, and is ready to sleep. We need to get those kidneys functioning a little better too. Bobby got up to dose 8. They held dose 5 due to his vital signs, but to get 7 doses this time around is terrific. I think he would tell you that each dose he got was horrible and he was begging to go home after dose 2. His nurse last night told him that the IL-2 is the hardest therapy they have up here. The side effects are nasty. I'm really proud of him, he suffered through this-despite the misery he was experiencing. He is still miserable but that will improve slowly over the next few days. The Hickman will be removed before we go home. It will need to be placed again, but they agreed that he could wait until he NEEDS it again in 7-8 weeks and get the new one then. This makes him happy (a little happy) because he won't have the Hickman for the summer. He will be able to swim, get wet...it really was a pain with the dressing and wires. So, we'll be heading home soon...if not tonight then it will be in the morning. We will let everyone know if he feels up to calls or visitors as the week goes on. I will have to work some this weekend so I doubt that he'll be up to having visitors if he is home trying to rest. It is easier when I'm there to help him shower, fix meals, get things for him...We'll keep you posted as to how he is feeling. P.S. I am so thankful for everyone that has volunteered to bring meals by every day for the next 2 weeks! You guys are amazing--and a special thank you to Pam Shank for coordinating all of this! Take care...and don't forget your sunblock!

Tuesday ~ 1PM

Bobby had a rough evening and night.(Monday night) He had a few episodes of rigors after the IL-2 doses. The cure for rigors is morphine. The morphine causes him nausea. The nausea causes anxiety so they gave him meds for that. That gave him nausea & vomiting...the cycle went on through the night. Once we got that under control, he started feeling much better. His output was decreased so they did start the Dopamine through the night. This course has been harder than the first, but that was expected. His spirits are down and I'm working harder at convincing him that he is doing OK. The nurses have been doing a great job. They are trying to minimize the interruptions although that is still in issue. Even with a big sign on the door that says "DO NOT ENTER"-a lady just knocked, came in, said she was here to CHECK THE NEEDLE BOX. She rattles the keys, opens the bin, sees that the needle box DOESN'T EVEN NEED CHANGED, says thank-you and goes back out. Just that 30 second interruption wakes him up, he has to shift around and get comfortable again and try to go back to sleep. It is frustrating.

I'm going to try to catch the 1:10 shuttle over to the family pavilion...be back soon!

I suppose we've been busy...

We got a call around 3 yesterday that they had a bed and we should leave then. I had to find Bobby. When I went out to the camper, he wasn't there. It took me a few minutes but he had walked around the front of the house as I was walking around the back of the house. We showered quickly and drove to Baltimore. We grabbed a quick bite at BK and Bobby ate 2 Whoppers on the way down. He said that they tasted good and it made him happy!

Everything has been pretty uneventful so far. Bobby has been very irritable and grumpy. He had too long to anticipate what was to come and by the time we finally got here, he seemed to get upset about each little thing. He was worried about things that MIGHT happen...and didn't. I have tried to stay on top of things and although HE wouldn't agree, everything has gone well. He has had ... 3 doses so far.

Well, I spoke too soon. We just had a 7 minute episode of rigors. He is resting comfortably now. OK...I give up. We just got him settled now after about 5 minutes of vomiting. He is asleep now. I'm doing everything I can do. He was mad that he was throwing up-blaming it on not having been given his anti-nausea medication. I assured him that, yes, he did get the medication. Maybe I'll start a chart for him so that he can see that we ARE doing things to help him and to prevent his misery. I know all of this is very hard. I am certainly open to ideas of ways that I can help him feel better. He has been talking about getting it over with so he can go home. They are taking good care of him here, but there's no place like home.

Not a Happy Camper...

Well, the first call from Hopkins came in. She said it doesn't look good but there is still a chance. She will call back around noon. I need to get Bobby OUTSIDE & BUSY. He is getting stir crazy.

Oh My

We didn't get a call from JHU yet so at 1:00 I called them. The coordinator called back and told Bobby that they still did not have any beds available. She said it was POSSIBLE that ONE patient might go home later. If that patient gets discharged, they might be able to admit Bobby. She will call us tonight around 6 or 7 to let us know. We aren't very happy. Bobby had wanted to take Julie to a horse show this weekend. We cancelled those plans (sorry Julie) and I took off several days of work because they changed his dates from Tuesday the 26th to Friday the 22nd. I keep packing up the pillows and then having to unpack them! This is a pain for all of us, but certainly a huge roller coaster ride for Bobby. He is the one that has to deal with the delay. It is hard! To be continued....

Bummer

We got a call from Hopkins around noon telling us that they were full and didn't have any beds for today. She said it was a possibility that they might have one later this evening, but she called at 6 to say they wouldn't. We knew that this was a possibility. In the beginning, they said that the coordinator will call you the day of your admission to let you know if you should come. We were/are all packed and ready to go. Bobby was getting pretty nervous about the whole thing and this didn't help. It just gives him more time to worry. They told us they would call us back in the morning around 10 but that it looked good for tomorrow. So, we will relax at home tonight and plan to go to Baltimore tomorrow. We had been told that they always start the first dose at 10PM. The nurse that called tonight said that sometimes if they get the patient admitted early enough, they will start with the 2PM dose. I'll let you know what happens tomorrow after we get settled. If they want us there for 2PM, we will have to leave shortly after they call in the morning. I wonder how they do these things with people that don't live close enough to drive? I guess I can ask that question tomorrow. We hope everyone has a great weekend!

Tired & Nervous...

We are getting ready to go back in to Hopkins for round 2 of the IL-2. We haven't heard from the coordinator that he has a bed yet but they said they might call around noon tomorrow to tell us. There is a chance that if they are busy, they will bump him to Saturday. We are still packed and ready to go tomorrow-as planned.

Bobby is nervous. He wants to go to bed but I'm still packing stuff up. I'm sure he is NOT looking forward to the misery and stress that is to come. I will be there with him which he says is what gets him through it. It would be miserable (or more so) if he (or anyone) had to be there alone. Some patients don't have family there which is sad. If I wasn't there with him there are 20 other people that would be!

We love you all...and will keep you posted. Thanks for all the support, prayers, and food. It is wonderful! Bobby just walked by and said, "I am so happy that you will be there with me. You don't know how comforting it is to know you will be there." And, I wouldn't have it any other way - forever & always...

Hopefully this displays a SLIDESHOW...

I think if you click on the pictures it will bring it up larger...

Winding Down...

We are winding down the week. Bobby is scheduled to go back in on Friday for the second round of IL-2. He is starting to get nervous. I don't blame him for not wanting to go through all that again. He is tough...and hopefully I can give him enough TLC to ease the discomforts. I suppose I can provide all the TLC needed but the nurses are the ones with the medications that make things better. The nausea, itching, rigors, and pain-hugs help but just don't cut it!

Bobby is feeling pretty good right now. His skin started peeling off of his hands and the soles of his feet this week. He is starting to get some irritation/soreness in his mouth. He is still very itchy and has very dry skin. That is all part of the IL-2. We expect things will get worse before they get better - considering he gets more IL-2 this week.

We went to the school last night for Julie's induction into the French Honor Society. We are very proud of her. I'd post a picture but she would not let me take any. She looked so pretty and smart. I guess we need to start saving for a class trip to France-or some other French-speaking country! We were careful-and concerned about being in that crowd of people. There were lots of people coughing...we're trying hard to not let anyone get sick at home!

So, we are packing and preparing to go back to Hopkins. Bobby will be more nervous as the week goes on. I will be able to make posts from the hospital to keep everyone up to date. Please feel free to email us or leave a message for Bobby on the guest book via the blog.

A little post for Grandy

This is a cute story and I would like to share it. Before I start, I want to say, THANK YOU to my mother. She has been here since before Bobby's treatment started. She left her home in Florida to come up and take care of our kids, the house, and our cats. We knew it was not going to be an easy job (and the kids were probably the least of her worries)! Grandy left Sunday to go back home. We appreciate all that she did while she was here--a job that normally takes two!
OK, so last night, Grandy was telling me all about this fish camp near her brother's house in New Smyrna Beach, FL. She stopped by Tom's house on her way home to Florida. Grandy went on and on about J.R's Fish Camp (Tom corrected her and said it is J.B.'s not J.R.'s) which was about 4 miles (Tom says 7 miles) from his house. Grandy raved about the food there with her favorite meal being the Stuffed Flounder (Tom says it is Grouper). Grandy couldn't wait to go to the restaurant she remembered so well. So, back in Maryland, Bobby needed a ride to go drop his truck off at the dealer for some work. We are headed up Halfway Blvd. and got stopped at the light. I look over at the post right beside us at the light and there are some bumper stickers stuck to the pole...I read one of the stickers...and couldn't believe what it was...I still can't believe it. Dan and I had to go turn around twice so that I could stop next to the pole again and get a picture. It is a small world! I can't wait to ask Grandy how her dinner was last night...

We Give Thanks...

Bobby and I want to express our gratitude to everyone who has been catering to us this week. Thank you Pam for coordinating the efforts and making arrangements to have meals delivered. Sheri & Donnie Lehman, we loved the beef stroganoff-it is always one of our favorites! The entire meal was perfect. Thank you.

Pam & Lance Shank: You have gone above and beyond! Pam has been here twice this week for us. Once with Slippery Beef Pot Pie & then Chicken Marsala. Both were excellent. Catherine Ann brought a huge meal at the beginning of the week. We had salad, lasagna, bread, wine, and orange salad. The kids loved having a variety of things they DO enjoy. We had enough leftovers to have another meal or two from each! Then, last night, Simon and Becky brought turkey loins, green beans, rice pilaf, & bee sting cake. I've never had some of these items but Bobby was familiar and couldn't wait. It was very good! Last of all, but not least...Steph Perkins brought baked Ziti, bread, & brownies over tonight. It was perfect--and also enough for another meal. We really have enjoyed our week.
We've enjoyed the beautifully prepared dishes, tasty desserts, wine, sparkling juice, fresh vegetables, and home made cakes and desserts.
Thank you all--it was all perfect! You are all wonderful friends...THANK YOU!

Bobby and I agreed that while we haven't known what we were getting FOR dinner each night, we were more excited to see WHO was coming with dinner. It was so nice to get to see everyone. I will admit that it was great for Bobby & I to get to see everyone--WE'VE MISSED YOU ALL! No one wants to stay but a few minutes...and that is OK. We don't want to take any chances with germs...but it has been nice visiting for a minute or two.

Time Flies

I can't believe it has been a week since we came home from the hospital. Bobby continued to improve daily throughout the week. By about Thursday, he was feeling much better. The dreams have subsided but he isn't sleeping the best. The vivid dreams are part of the IL-2. He isn't happy about the Hickman catheter. It is a real pain in the neck for him (literally). He is having trouble keeping his dressing on. Because it is on his chest/shoulder, it stretches and pulls the dressing. We change it every day or two (instead of weekly which is required). I am not noticing that he is as short of breath as he was earlier in the week. He isn't as grumpy either! His skin is improving too. The IL-2 causes dry and peeling skin. We tried several products and finally found one that works great. I believe that today, he won't even need to use it. Since he is feeling better, he may appreciate some phone calls this week. I would probably recommend calling the house instead of his cell phone (long story). The short version is that he is using a new cell phone that will eventually become our son Dan's phone number. Dan, is using Bobby's old phone until they swap numbers. Once they swap, Bobby will have his new phone with his old number.

We had a change of plans as far as treatments go. We had planned on going back to Hopkins on Tuesday. They changed it to the following Tuesday, and now backed it up to Friday. I guess plans could still get moved around. We'll just be ready to go when they tell us to be there. Bobby is dreading those days in the hospital. It is hard to know ahead of time that misery is just around the corner. We know what to expect-which relieves the unknown but confirms the unpleasantness of it all.

I will try to get some more pictures posted. I still have some from the hospital, and others from last week. Time goes by quickly. We appreciate everything that is being done for us...from many friends & family. We couldn't do it without all of you! Be back soon...

Our stomachs are full!

Many thanks to Catherine-Ann & Joe George for the delicious lasagna dinner last night. We also want to thank Sheri & Donnie Lehman for the terrific beef stroganoff dinner tonight! Pam and the other wives have gotten together to bring meals to us. I can not say how helpful this is...but the kids would definitely tell you how grateful they are. I haven't felt much like cooking (or eating). So, if I don't cook, we don't generally get much for the rest of the family to eat. They are old enough to fix themselves food--but it is Easy Mac or a can of soup. They have been very grateful to have a homemade meal. THANK YOU!!!
Bobby had a check up today in Baltimore at Dr. Sharfman's office. Everything was great. His blood pressure was up a bit (but much better than it was yesterday). He is taking his BP medication now. His appetite is back and he is not so short of breath. His peeling skin is improving. I found a lotion that has worked very well on his peeling face. He likes it and it works well. He looks great! I took a picture last night...but it is on the computer which is in my car. I'll post it tomorrow morning (planned).We appreciate everyone respecting our request to not have visitors. We are working hard to keep the germs away. Poor Jim (Bobby's brother) hasn't come to see Bobby since he's been home...but then Jim came down with the flu yesterday and is quite sick. We are thankful that he hadn't come to visit because he was probably contagious before he knew he was sick. Bobby has been trying to email, phone, and text people but is staying clear of crowds. We were told by JHU to hang a sign on the door about visitors. The doctor recommends that his chemo patients keep a bottle of hand sanitizer and masks at the front door. Of course, we are compliant patients and have placed those items right on the front porch. We've all been diligent about hand washing and keeping kisses to a minimum. No handshakes and no sick people.
We had to pick up a prescription today at CVS. There was a boy in the store who was coughing...and coughing and sniffling...and coughing! We could not believe his mother allowed him to come in. Bobby just went back out to the car to get away from this snotty, coughing kid. I told Bobby that the Rx counter is probably not a good place to be. Everyone seemed sick! We will use the drive-thru next time. The doctor is pleased that Bobby got 9 doses of IL-2 during his first round. We will go back in 2 weeks to do it again. We feel better prepared. Although we won't look forward to the next session, we do have some experience now and know what to expect. I spoke to the nurse manager at JHU today. I told her how happy we were with the staff and nurses there. Everyone was attentive and took great care of Bobby. He liked the nurses and the attention he was getting! We were comforted by the atmosphere there and the care we were given was exceptional. Thank you! Again, thanks to everyone for your efforts...we appreciate everything you do! More to come on the plan for the next few weeks. Hello to all!

Improvements

Bobby is improving daily. He is still having very vivid (and scary) dreams. He wakes up with his heart pounding...and has grand descriptions of what was happening in the dream. I can see themes in the dreams that correlate to events happening in real life. I'm sure the diagnosis gives feelings of helplessness and desperation.

We've been taking it easy this morning, relaxing with the newspaper, coffee...and getting the kids off to school. Julie is quarantined in her room (away from Daddy) because she has a sore throat and feels crappy. She is being very attentive to hand washing and minimizing her time that she is close to anyone else (esp. Dad). The kids are all pitching in and helping out. Grandy (Donna's mom) has been here with the kids. Yesterday, she left to take a little road trip around perhaps, WV. A sight-seeing tour. We need her back next week when we go for round 2. Grandy normally lives in Florida so it is too far for her to drive home for 10 days and then come back. She needed a little break from being here.

We have had numerous offers for people to help. Pam Shank has made arrangements for meals for our family for the next two weeks. She has been working hard and everyone here appreciates her efforts. Thank you to everyone for helping out. The support is amazing.

Bobby feels better today. He is still a little nauseated and sounds short of breath. He has more energy and his mood is "less grumpy." His appetite is returning slowly. He is still saying a few little goofy things...but not like yesterday or the day before! He is taking care of business things (bills, maintenance...) like normal.

I'm gonna go draw some bath water for him...maybe I'll join him!

Finally...

I'm bringing him home!!! We have things to get completed here at JHU this morning...and will be coming home later today. They have asked Bobby to write a sentence every day since he was admitted. He has written, "I love my wife" each day, until today when he wrote, "I want to go home." And he will.

Bobby is feeling very tired, still nauseated, and just icky. It is a HUGE improvement since yesterday. He is more himself today, complaining about this and that. This morning, among other little things, he is uncomfortable in the bed. I don't blame him one bit...but he has tolerated it well when there were worse things to complain about.

I'll post tonight after he is snug in his bed. He will hopefully be much more comfortable there! Thank you all for your support this week! I havent turned down any offers...and still won't! Give him some time until he feels like talking and we see if he wants visitors.

Friday PM

Throughout the day today, I noticed Bobby becomming more and more sleepy and that he was saying things that just didn't make sense. He asked me questions about the kids...that weren't correct. He would ask me who it was that called--and no one had called. I mentioned this to the nurses and discussed whether it was confusion or just vivid dreaming. After the night shift nurse came on, she took his vitals. His BP is still up there (which is good because it tends to drop during treatment), but his heart rate was around 120--which is where they start putting patients on the monitor. He had a fever of 101.7. His nurse called the doctor and he said to stop the IL-2 treatments. Bobby has gotten 9 so far and that is great. Although they only give a total of 14, if you get less, it isn't considered a failure...they just will give UP TO 14. Of course, we all know that Mr. Bobby wanted all 14...but I don't believe the doctor said that 14 works better than 9!

Bobby apologized to me. I asked what he was apologizing for and he said for not getting 14 doses. HE is the one wanting 14 doses...I'm the one who wants to bring my husband HOME from the hospital...and well enough to come back in 2 weeks for Round 2. I told him that his body (not his will power) said to stop at 9. His body is too stressed to continue. If 9 is his magic number...let it be 9. Maybe we should have had 9 kids? Anyway, I've tried to tell him...9 is great.

He still feels very sick. I got him to take a 1/2 of a popsicle. He didn't eat dinner...in fact, he slept through it. The plan is that if his fever is down enough tomorrow, they will let him come home. If not...we'll try again Sunday.

I told Jim this story & I'd like to share it with you...it was cute. Jim told me to tell Bobby that he was proud of him. Bobby was sleeping but I did tell him. He didn't move a muscle. Out like a light! Then, a loud noise from the street came storming thru...vrroooom vroommmm.................His eyes open up and he says, "Those are dirt bikes! Dirt bikes are a huge problem in Baltimore City..." He was probably right about the noise that woke him being a dirtbike or two. I wouldn't know! It was cute because my voice didn't arouse him!

So, we wait for tomorrow to see what his vitals are. See what his temperature is. I'll keep you posted. He is ready this time :) .

Day 4 (and the night before)

Last night went well. Bobby got his scheduled 10PM dose (#7). He did have some rigors at about 2AM but the nurse was here quickly with the antidote. He said that the rigors are the worst part of all of this. We have learned to manage them and to catch them at the onset. He does better with them now than in the beginning. The doctor was in this morning and was pleased that he is doing so well. They have not had to hold any doses so far and he has gotten 8/14. His platelets have dropped, but his blood pressure, temperature & output have been stable enough to keep the doses coming.

Bobby has been sleeping well despite what seems like 5 minute interruptions. He lost the day yesterday, thinking it was still Thursday when they asked him this morning. I reminded him that he slept thru Thursday...and he remembered.

MSP just flew into Hopkins. We can see the approach but not the helipad. I saw them coming and called Bobby's name a few times (quietly) to try to let him watch them come in. He didn't budge...UNTIL the helicopter turned and he heard them. His eyes popped open...responsive only to the noise of that which is closeset to his heart!

Day 3

Today, Bobby has gotten doses 4 & 5. They are about to hang dose 6 as soon as it comes up from the pharmacy. He is doing well. They said many of the side effects don't come until the later doses--and so far, he has been tolerating it very well. His mood is holding up pretty well (as long as he is feeling OK). He doesn't like being nauseated--but who does. They gave him medication this morning to help with the nausea/vomiting and he has been sleeping it off all day. He did sit up for a few minutes and ate a turkey club sandwich. He was falling asleep while he was chewing. I'm happy that he is resting quietly now. There are interruptions about every 15 minutes from the staff...we all know it is impossible to rest in a hospital. First, vitals, then the nurse, then the doctors, the cleaning people, the kitchen, the snack cart, the social worker, nurse manager, a nurse or 2, and that is all before lunch. Oh, and his doctor popped in a few times. They are taking very good care of him...and he is pleased with that.

Thank you for the emails and notes of encouragement. He likes reading everything from everyone. I just saw the sign today that says "No flowers or potted plants" on the door of the unit. I got him some balloons to brighten up his room (although he has big windows with a view of the city and says he likes having them open so he can see the ??sunshine). I had to ask him about that because we haven't seen the sun for a few days in Maryland!! It did peek out for a few minutes last evening...but right now, it is raining again.

Dose 6 is hanging now...and he is back to sleep! Please email me if I'm missing anything you want to know...I'll try to catch it in the next post!

Day 2

Bobby just asked me how the blog was coming...and I said, "Its not...I've been sleeping!" I hadn't posted anything--and he was disappointed. Sorry...I've been kind of busy fluffing pillows and tucking in sheets! Let's see, yesterday, we came down to Hopkins. Bobby had his Hickman catheter placed. It didn't run the first time so they had to place a second one. That caused some extra tenderness in his neck/chest but that has improved. After the catheter was placed, we were taken up to his room on the 5th floor. The nurses were like flies on him (and he loved that). He is making friends with all of the nurses. They are young, cute, and are taking great care of him. He has mentioned several times that he is impressed with the care. Last night, they hung the Interleukin-2 at 10PM as planned. About 45 minutes later, the "rigors" started. This is a side effect of the medication and the nurses were quick to give him morphine to help control the rigors. Chills [Rigors] Chills are extreme, involuntary muscle contractions with characteristic paroxysms of violent shivering and teeth chattering. Commonly accompanied by a fever, chills tend to arise suddenly, usually heralding the onset of infection. This is expected from the body's reaction to the IL-2. The chills I saw last night were severe...not like I've seen before. It took about 15 minutes for the medication to work and for him to feel better. Nausea has also been a problem. Finally, some Zofran helped him this morning. Other than the chills & nausea, he is feeling pretty good. Bobby is eating like normal...well...normal isn't quite covering it. Today, for lunch: Sloppy Joe, macaroni & cheese, tossed salad, roll, fruit cup, cookie...and I think I'm missing one or two things. Oh, he saved his chips for later. I hope it stays where he put it!He gets nervous when it is time for the next dose (in 30 minutes). They said they would just give him the morphine to prevent the rigors (he thought this was a great idea). The plan is to keep going with the doses until we get to 14. They are watching him closely and so far--he's doing great. His spirits are hanging in there. His eyes just lit up when MSP just landed at the hospital. He likes being able to sleep. I hang a note on the door so they don't come in every 5 minutes and wake him. He slept for a few solid hours this morning. OK, we are getting ready for the 2PM dose. He has been playing on Skype and texting people. I'll post more this evening. Hugs to all...we feel the love!