BOBBY'S INFOBYTES

Do you have skin? Read this story (our local newspaper)

2011-05-30T06:50:00.001-04:00

Do you have skin? Read this story

Maybe I don't need to write anything. The article speaks for itself. I could say..."If you have any questions...please give us a call or send an email. We'd love to hear from you." which would be fine. Bobby has such a huge message to send, and he has learned so much from the progression of this disease. I shouldn't say he, because definitely WE have learned so much.

In the next few days, we'll be watching for the June issue of CURE Magazine. They did a good bit of work with Bobby on an article so I hope it turns into something nice.

I want to get this posted and hope to write more and post some pictures today...later.
Love to all

Pictures from our trip to Miami

2011-04-10T13:49:00.002-04:00

Hopefully, this will post a slide show of pictures from our Bristol-Myers Squibb trip to Miami. More to follow...

On Stage today

2011-04-06T11:11:00.000-04:00

Bobby and I are getting ready for the practice of his on-stage speaking part today. He will speak today at 3 to the sales team from Bristol-Myers Squibb. Bobby will tell his story so that the sales reps can have someone to remember when they are out there presenting Yervoy to oncologists across the country.

I think it is going to be a very emotional morning. As we chat about the things on his list, the emotions are simmering. I'll take notes so I can bring back his experience and share it with everyone.

I'm so blessed to be holding on to Bobby's arm as he walks in...I'm blessed to be here but Bobby has so many of you right here with him...he will share his story about all the people in his life that are so important to him. He's our hero!

In Miami

2011-04-05T10:59:00.003-04:00

*This is the first post from my new cellphone. We will see how it goes...
Bristol-Myers Squibb (BMS) contacted Bobby after seeing his article in the Melanoma Research Foundation's newsletter and invited him to come to Miami for the launch of Yervoy, the miracle drug which was recently approved to treat metastatic melanoma. Bobby was asked to speak to BMS's sales team from a patient's perspective after treatment with Yervoy. The prognosis for Stage IV melanoma is currently poor, but with new drugs like ipilimumab, we hope to see that change. Yervoy was approved on March 25.
Bobby and I flew to Miami on Saturday and checked in at the Miami Doral Resort...

Bristol-Myers wanted Bobby here for Tuesday and Wednesday. We decided to add a few days to the trip and flew down Saturday. We have had a wonderful time so far and have met many amazing people. I have lots of pictures to post and will have much more to say :) We are currently driving over to the west coast of FL to meet Grandy (Donna's mother) for lunch.

(I will post this so I don't lose all of it) Love to all

January 2011

2011-03-31T09:34:00.000-04:00

I never finished this post so I guess I never posted it. It is from January, 2011. I'll go ahead and post it "as is" and I'll move on-it is now the end of March.
Bobby and I are getting ready for our next trip to Charlotte. We still go every 12 weeks for a dose of Ipi and scans. The stress level increases - from code yellow to code orange until his scans are over.

Bobby is weaving his way through his complicated obstacle course for getting back to work. He has worked hard to get his police powers reinstated, be reissued his duty weapon and a police car. Getting these things back was much easier than it was to get them initially. I can only imagine how he must feel and I'm sure he never expected that he would be where he is today. The emotional roller coaster has steep curves and quite a few hair-pin turns. It definitely makes you feel a pit in the middle of your stomach...

Back from Charlotte

2011-01-26T22:42:00.000-05:00

We got back from Charlotte late tonight. The weather on the way home was kind of a little bit nasty! When my mother said that we should have left at 6 a.m. and I didn't listen...I'll admit she was right. We did get up early (for us) at 0800 and enjoyed a great breakfast at the Hilton Garden Inn in Charlotte (our routine). Bobby did a terrific job driving us home. I'm sure he has a few (more) gray hairs on his head. Yes, he has a few hairs and some of them are gray.

Anyway, the trip went well. I'll blog more about the details and the plan for the next few months. It is just getting late tonight and Bobby and I both have to work in the morning. I'll finish up tomorrow.

What you want to hear is: There are no changes on the CT scans. The plan is to continue Ipilimumab and move forward. Bobby is tolerating the drug and the melanoma ISN'T!!! That is the simple answer to our prayers( & yours). We thank all of you for all of the support and the faith that you showed from the beginning that we WOULD get to this point. We have and we will...thanks to you!

Goodnight for now. We hope everyone is safe in their homes and getting ready to snuggle down in a warm bed. We love you all. For those of you who are Melanoma Warriors---hang in there, Bobby is proof that some treatments CAN and DO work. I know it is difficult but each day that passes is another day that may show us a cure, a treatment, the answers...to heal EVERY patient with melanoma.

Goodnight,
Bobby (who is still plowing) and Donna
Even after driving all day, and being so tired, he is still trying to help others by moving snow from their driveways...that is Bobby!

Doctor's Orders

2010-12-09T11:14:00.000-05:00

Today is Bobby's first day back to work. He has been off for the last 18 months while fighting this battle against melanoma. With the help of family, friends, many doctors, science & technology, many other melanoma patients, and through our prayers he has been healed.

Beating Stage IV melanoma is not something you have heard very often. In the past, it was next to impossible. When Bobby was diagnosed in 2007, we knew the numbers and although we tried not to focus on them, the poor prognosis was hard to ignore. Today, we are resetting the standard. Melanoma is being treated and patients are seeing improvement. This is 2010 and we hope that as new drugs continue to be developed, the previous numbers will be irrelevant.

Bobby continues to receive Ipilimumab every 12 weeks. The future is uncertain. What we learn from patients like Bobby will be the new standard. The doctors don't know how to proceed, so they will continue with the same treatment he has been getting.

Bobby has always been a great teacher, a leader and a role model. He continues to keep his desire to help others and is doing this with such strength and honor. Today is what it is all about.

LET'S GET OVER THIS CANCER AND GET ON WITH LIFE!

Melanoma Research Foundation Newsletter

2010-11-21T12:52:00.002-05:00

We were excited when our MRF newsletter arrived today! The article that was written is exciting-it is almost as if we are reading about someone else and we are so happy for that patient and his family. WOW, it sounds great--and it is!

Bobby was first diagnosed with melanoma in 2007. At that time, the prognosis was poor and we had few options. Interferon was one option. Interferon is given for one year and it is a year of feeling like crap. The statistics show that Interferon will extend the patient's life by about-one year. One thing that Dr. Sharfman, an oncologist from Hopkins, said to us early in the diagnosis was (regarding Interferon) that even though you lose a year to gain a year, "WHAT IF that is the year that a treatment is found to control melanoma?" Bobby chose to enter a clinical trial with the hope of better results than Interferon could promise. We never lost hope that this might be the year that they find a treatment that works. Ipilimumab was not offered to Bobby in 2007 or 2008, but by 2009 it was at the top of the list as the next drug to be approved to treat melanoma. That was the year we needed. In 2007, we didn't even talk about what we might be doing in 2010.

The FDA was supposed to review and hopefully approve Ipi by the end of this year. We were disappointed to hear that this approval date has been pushed into 2011. This is a pretty good article that talks about Ipi and its future - Ipilimumab The brand name for Ipilimumab will be called Yervoy after FDA approval. I found another article which was interesting: Yervoy

Our hope for 2011 is that it will become that year which so many melanoma patients need.

Today's Visit (11/2/10)

2010-11-02T22:55:00.001-04:00

Well, I have planned on writing this all day--and now, it is after 10. Bobby and I had a nice dinner at a restaurant that we remembered from a few visits back. We had a nice (hint) celebratory dinner together-with some awesome steaks.

The results today were nothing showing, nothing new...with a bit of a bonus. We asked Dr. Amin about that one, stable, 6mm tumor that hasn't been changing - we assumed it was just stubborn. Dr. Amin said that he could not say it was or wasn't melanoma without a biopsy AND that he wasn't willing to open Bobby's chest to find out. So, we will assume that since it hasn't grown, it hasn't shrunk, and it didn't disappear or change like the other melanoma tumors that it is probably not melanoma. It could be a granuloma or scar tissue. Neither are related to melanoma or are concerning. This news is better than I can put into words. Having assumed that there was one tumor still "in there" was like having one rotten potato in the basket. By taking that one tumor (NT4) out of the equation, the CT scan shows NO CANCER and the doctor said it would be read as negative.

As the news spread quickly, Bobby didn't seem as ready to celebrate. The roller coaster ride doesn't always leave you feeling thrilled. It isn't so easy to believe what you are hearing when the statistics for melanoma have been poor. This truly is unbelievable and is as good as it will ever get.

Bobby will continue to get scans every 12 weeks. As that time gets closer, we will again hold our breath. Melanoma never burns its bridges. We are able to keep the gates closed but can never be guaranteed that it will be gone forever. Melanoma is an ugly beast and can show up anytime-any time....till death do us part. If it is only just today, then, today he is cancer-free! We'll never hear better news than this.

Bobby says, "You are never CURED from melanoma, it is just under control."

In this path we are making, Bobby is a pioneer. A great friend who has melanoma says that Bobby is a beacon for others to look toward. This is something that every person suffering from melanoma needs.

Last but not least, we want to say, "Thank you!" to all of our friends, family, and coworkers who have helped us so much. We need you (and a healthy dose of Ipi) to get us through. Goodnight, Bobby & Donna

We would also like to say THANK YOU to our kids. Lindsey, Julie, Dan: We couldn't do this without you being as helpful and mature as you are. We appreciate it. (And the grandparents for stepping in while we are gone). Love you all.

Latest trip to Charlotte 8/10

2010-08-16T12:07:00.001-04:00

Bobby, Dan and I returned from Charlotte on Wednesday. It was week 48 in the clinical trial....48/60. More on this in a bit. I'm sure you want to hear about the scans and any news. Well, the news is (still) terrific. The scans showed nothing new. There is still that one tumor that won't budge. We are talking about melanoma here--perhaps it would be a bit unreasonable to expect EVERY tumor to cooperate? That one tumor hasn't changed. It is small and it isn't growing-we won't let it take away from the miracle we are seeing. Bobby hasn't had problems with side effects which is icing on the cake.

There is a study that was done comparing melanoma patients who received Ipi, Ipi + vaccine, and vaccine only. The overall survival for the patients in this study was just over 10 months. Since advanced melanoma doesn't offer many miracles, it is hard to even describe with words.

What's next? The next trip to Charlotte is in November. That visit will be the same as others (scans, labs, Ipi) and that will wrap up the original clinical trial. Ending that trial with a "COMPLETE RESPONSE" will be the goal...and will hopefully open doors for Ipi to obtain FDA approval. Ipi has the best outcome of any treatment for advanced melanoma so far. 10-15% of patients do well and those are considered high numbers. Bobby may be a rare specimen--very special to all of us and to other melanoma patients forever.

Bobby's doctor said that there is no data to tell us what will happen next. They plan to continue giving Bobby Ipi like he has been getting it over the last year. When the drug gets FDA approval, there could be some changes but we don't know what those might be. The future will be what is happening now...and is a definite blessing.

The kids start school on Wednesday. Summer ended quickly. We have pictures from our vacation that I'll post soon. I've been trying to get this update posted since Thursday...getting pictures up will be a work in progress.

Georgia!

2010-07-16T18:02:00.000-04:00

Sent on the Sprint® Now Network from my BlackBerry®

Vacation 2010

2010-07-16T17:44:00.000-04:00

Our Summer Vacation is underway! This year, we are southbound--to Southwest Florida! I know that Florida doesn't seem very far but it will have taken us 3 days and many stops along the way. Our first night was in North Carolina. We found a campground to stop into for the night. I'll post pictures as soon as I have a computer that will let me post them. It was--interesting, if not amusing. Definitately an experience. Pictures are worth 1000 words.
the
Day 2-We visited our friends in Wake Forest, NC. That was a great visit with the Nanni family. Cindy fed all of us-and we are very lucky to have great friends. We wish they still lived next door--we miss having great neighbors--at least on one side. We had a great day--and then headed back to our campsite in a state park. The park makes it very clear that the gates close at 9PM--be in before 9 or you can't get to your campsite. We made it in by 9--by about 10 minutes. The park was huge but I bet there were only 20 campers there--it was very dark, very quiet, and very close to a big lake. The night went well.

We brought one cat with us. Lexi needs medicine 2x/day. She is travelling well and seems to enjoy the attention she is getting. We have her in the camper and the air conditioner is running via the generator (in the back of the truck). We are taking frequent breaks and checking on her often.

We are now enroute to Brunswick, GA. We have a mobile hot-spot via Julie's phone--YAY! I love having internet while on the highway! Bobby is doing a terrific job driving--we are pulling our 32 foot 5th wheel--and have all of our stuff with us. Gonna post this for now...stay tuned for more adventures!

IMG00195.jpg

2010-07-16T17:31:00.000-04:00

They are doing GREAT!! I'm very proud of them!
Sent on the Sprint® Now Network from my BlackBerry®

Tumor Log

2010-07-03T18:12:00.001-04:00

This is Bobby's most recent 'Tumor Log'

I have to say...this is a miracle--and true evidence that it can happen. When you look at this, know that it has happened because of YOU...the prayers, the support, the clinical trials, the patients that have suffered and died from melanoma, the love, work--and effort of endless people. It speaks for itself--and we say, "Thank you, and we love you!"

A great video about Bobby's treatment

2010-06-23T23:29:00.000-04:00

This video describes the treatment that Bobby is getting...it is pretty interesting. The physician who is speaking in the video, Dr. Lynn Schuchter is from UPENN. She is talking about the Ipilimumab (Ipi) that Bobby has been getting. Great news...that we kind of knew already.

Life is pretty normal here. Trying to raise 3 teenagers, a herd of cats, keep the house clean, work, garden, sleep. Eating ranks pretty high up there too. Bobby's next scans are in early/mid August. I want to scan or re-create the tumor log from his visits. I will work on that--and post it. Now that is something to share!!! It puts all of this into perspective. Bobby is tired and feels run down but that is really the only side effect he has had from this medication (and fighting off cancer)...he has a right to be tired! He's trying to slow down the pace and listen to his body. I listen too and don't hesitate to tell him what I hear.

We've been busy lately and posting has been sparse. I will try to keep up and will try to check the emails more often to catch up on messages. We hope your summer is starting off well. We'd love to hear from you.

Promising News About Immunotherapy from Patient Power® on Vimeo.

A bit of good news...from the 2010 Melanoma Conference (ASCO)

2010-06-05T22:40:00.000-04:00

Conclusions: In patients who progressed following an initial
response to the induction course of therapy, the disease control rate in
the ipilimumab arms was 65%-75% compared to 0% in the gp100 arm upon
re-induction. These findings may have implications for the use of
ipilimumab therapy in the long-term management of advanced melanoma.... (Ipilimumab is the drug Bobby is getting in the clinical trial)

Our apologies for the delay...

2010-05-20T23:11:00.001-04:00

Here is a brief update-I'll chat more when it isn't so late. We love you all and, to be honest, many of our friends and family are getting instant updates via Facebook. I'll try to remember to post to the blog too.

Anyway, we just returned from Charlotte last evening. Bobby had scans, blood work, and a dose of medication. The day was a mess. Bobby tried to help the nurses out so he want down to the lab for his blood draw. That really messed up the nurse's plan for the day. The lab messed up the tubes...and it all went downhill!

Bobby's scans look great! He originally had abut 6 tumors that they were measuring. Tumor 1, 2, 3, 4, & 6 are gone...not a trace. However that one tumor # 5 is hanging around. The good thing is that it is NOT growing either! We are sooo blessed. Bobby is feeling pretty well-he gets tired easily and doesn't have the stamina he used to have. We're ok with that. He hasn't really had any side effects. He has been very fortunate as there could be side effects that are nasty.
Everyone else here is well. We're busy with kid stuff, teaching Julie to drive--earning our parenthood badge. We made it through Lindsey but, this one is just different. Dan is well-he is dragging through school (which is almost over!!) We go back to NC in August (12 weeks) for the next dose.
We send love to everyone...and thank you for checking in. Please email or call if you want to say hello. We're here-we may be napping, gardening, enjoying life while we can. Love to all, D & B

May is Melanoma Prevention month...

2010-05-03T22:50:00.000-04:00

Tanning Is Out, Your Skin Is In (60 seconds) from Amy Mason on Vimeo.

Current Report

2010-02-23T15:13:00.000-05:00

We're spending our day at the cancer center. Bobby got up early and came over for his scans. It was very sweet for him to let me sleep in. After the scans, he came back and we had a nice breakfast in the hotel. We came back over for his appointment with Dr. Amin and to get today's dose of the Ipilimumab. He is getting that now. Everything has gone well. There were no changes on Bobby's CT scan. The doctor said they look the same as they did last time. We'll take that! We also don't have to come back for 3 months-we'll take that too! Bobby is tired-he did all of the driving yesterday. We were up late and he was up early. He just grabbed a little cat nap but this place is very noisy. I thought he was going to strangle the one nurse...big mouth!

So, we're very happy with the results we getting. Bobby is tolerating this drug well AND it is working! We're very thankful and blessed. Thank you for checking in-we love you all!

Cut and Paste...

2010-01-26T18:05:00.000-05:00

The news today--is just as terrific as the news I had to share 4 weeks ago! I could cut and paste the entire post from last time. Well, all of it except the part about the kids because, unfortunately, we didn't bring them along this time.{{wink}}

Dr. Amin again showed us the scan from today and compared it to the scan from 4 weeks ago. There is only ONE tiny speck of a tumor remaining in the left lung. Dr. Amin looked for the other tumors and they aren't there. It is as if God took a pencil eraser and just erased each spot. Miracles DO happen. We are thankful for more than the regression, we are thankful that Bobby has been able to tolerate the drug, he has been healthy, the side effects are minimal, and he is able to continue receiving the medication. Along the way, there have been many hurdles that he has made it over.

Bobby will get another CT scan, labs, and a dose of the drug in 4 weeks. After that dose, the time period changes to every 3 months. We will need to see what happens over the next year regarding this drug. It is expected to get FDA approval soon which means that it will be available to others. Melissa said that when the drug does get approved, it may be available only at certain specialized cancer centers. Bobby told her that he would still want to come to Charlotte as long as he gets to see her. We've loved coming to Charlotte (from years in the past) but now, history has been made here. Hopefully, for many, many years to come, people will continue to benefit from this drug. We want to have success stories from others with melanoma. Perhaps this is the year that the statistics will start to change!

The news is TERRIFIC!!

2009-12-29T13:04:00.000-05:00

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)!

2009-12-29T11:54:00.001-05:00

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!

IMG00063.jpg

2009-12-29T11:01:00.001-05:00

It is Tuesday and we're in Charlotte

2009-12-29T08:40:00.002-05:00

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

2009-12-27T11:11:00.002-05:00

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!

2009-12-16T21:22:00.008-05:00

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...

2009-12-16T18:02:00.010-05:00

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...

2009-12-16T17:53:00.002-05:00

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...

2009-12-03T20:35:00.002-05:00

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

2009-12-01T19:47:00.003-05:00

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!

2009-12-01T14:57:00.001-05:00

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

2009-12-01T07:09:00.002-05:00

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

2009-11-30T19:57:00.001-05:00

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...

2009-11-15T21:18:00.005-05:00

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

2009-11-06T09:22:00.002-05:00

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

2009-11-02T16:26:00.004-05:00

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!

New Message

2009-10-26T16:35:00.001-04:00

Driving the Blue Ridge Parkway. Cloudy 54 degrees. Lovin life & the views.

2009-10-23T00:27:00.001-04:00

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

Interesting Stuff

2009-10-17T11:41:00.013-04:00

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.

2009-10-09T19:05:00.001-04:00

www.GlennasFund.org

2009-10-06T12:11:00.001-04:00

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

2009-10-03T16:15:00.001-04:00

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

2009-10-03T13:56:00.002-04:00

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

2009-09-23T04:56:00.001-04:00

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

2009-09-23T04:44:00.001-04:00

Beach Vacations May Put Kids at Risk

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2009-09-22T12:08:00.001-04:00

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.

New Message

2009-09-19T18:47:00.000-04:00

Bobby got up from his nap & came down to the pond. Dan caught a fish but it fell off the hook.

New Message

2009-09-19T18:20:00.001-04:00

Fishing at the pond.

New Message

2009-09-19T14:54:00.000-04:00

Dan won the prize...free dessert!

New Message

2009-09-19T14:17:00.000-04:00

Well...its not ALL bad! In fact....we found a great place to eat! (sorry Julie)

2009-09-18T16:19:00.001-04:00

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

New Message

2009-09-17T18:26:00.001-04:00

Nuclear Power...is creepy!

2009-09-16T12:50:00.001-04:00

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..

2009-09-15T22:05:00.002-04:00

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!

2009-09-15T12:33:00.001-04:00

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!

New Message

2009-09-14T17:04:00.000-04:00

I love Virginia!

2009-09-14T13:22:00.000-04:00

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

2009-09-03T21:23:00.001-04:00

OK..this is hilarious

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

2009-08-31T13:44:00.000-04:00

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

Update

2009-08-27T18:46:00.003-04:00

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

2009-08-16T21:37:00.002-04:00

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

2009-08-12T10:28:00.002-04:00

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

2009-08-08T20:56:00.002-04:00

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

2009-08-04T18:11:00.001-04:00

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.

2009-08-04T10:17:00.001-04:00

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

The Girls

2009-07-28T23:18:00.000-04:00

Say no more

2009-07-28T22:49:00.000-04:00

I'm finding more pics...check back soon...

2009-07-28T22:48:00.000-04:00

Clinical Trial Information-The study drug

2009-07-24T18:38:00.002-04:00

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

2009-07-24T11:12:00.002-04:00

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!

2009-07-23T19:11:00.001-04:00

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.

Healing Touch

2009-07-23T17:00:00.001-04:00

2009-07-23T15:59:00.001-04:00

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

2009-07-23T10:26:00.000-04:00

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)

2009-07-21T11:12:00.000-04:00

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.

Juie's 1st time pulling Old Blue

2009-07-20T18:14:00.001-04:00

Our CAMPing trip

2009-07-14T17:57:00.000-04:00

Roughing it in Colorado! Dan, thanks for taking pictures while Mom wasn't there.

Appointments...

2009-07-14T16:44:00.004-04:00

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!

2009-07-11T15:35:00.002-04:00

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!

2009-07-09T10:41:00.001-04:00

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, souveniers, 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

2009-07-02T23:12:00.002-04:00

Hail at Hart City Ranch, Rapid City, SD

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

2009-07-02T22:57:00.001-04:00

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.

Video (above)

2009-07-02T21:10:00.005-04:00

I just uploaded a video of our view from the top of a very very rough, long, steep road...Butterfield Canyon Road took us to the peak where we could view the copper mine below (Kennecott Copper Mine). It was a narrow, sometimes dirt road with hairpin turns. The view from the top made it worth it! Oh, also, getting back down...safely also helped!

Aunt Tracy found him!

2009-07-01T20:51:00.002-04:00

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

Heading East (in Utah)

2009-06-27T18:36:00.001-04:00

I hope the link to the pictures is working for everyone

2009-06-24T00:01:00.002-04:00

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

Our view this morning

2009-06-23T13:30:00.001-04:00

The Pits...

2009-06-22T23:57:00.002-04:00

...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

New Message

2009-06-22T16:55:00.001-04:00

The view just keeps getting better!

Teton National Park

2009-06-22T16:48:00.001-04:00

2009-06-21T21:31:00.000-04:00

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

New Message

2009-06-20T21:54:00.001-04:00

One last pic before we're out of service...

New Message

2009-06-20T19:55:00.001-04:00

Going back to campground in Yellowstone...no signal, no web! Good Night bears.

Leaving Cody, WY

2009-06-20T17:03:00.001-04:00

It's hot & humid?

2009-06-20T17:01:00.001-04:00

I'll post/send pics when I have a bit of signal. In Yellowstone there are no cell towers-JUST BEAR & BUFFALO!

Its raining a little bit

2009-06-20T16:59:00.001-04:00

New Message

2009-06-19T16:27:00.001-04:00

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

2009-06-19T16:22:00.001-04:00

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

New Message

2009-06-19T13:50:00.001-04:00

Hello from Gillette, Wyoming

2009-06-19T10:34:00.001-04:00

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