Sunday

Santa made his way through Metairie yesterday and I can say that this was a very special Christmas for both of us.

Harry has survived a difficult year, reunited with his mother, and found cousins all over the place.

My family has once again proved how lucky we are to be related to you. This past year would have been impossible without the support we have gotten from you.

To both my family and his you are all worth your weight in gold and I thank GOD each day for each of you...

I will post some pictures of our Christmas in the next day or so...

Mona & Harry

Merry Christmas

Good morning to all;

At the last minute we decided to head to Lafayette for gumbo with my sisters, their families and my godchild today - then onto Gonzales tonight for a Ravain Christmas.. then home to get the house ready for Santa Claus - who is arriving on Saturday this year.

Harry had his stitches out on Tuesday, he had a little spill about 10 days ago at the bank and had 6 stitches in his chin - but they are gone now.

We hope all of you are celebrating the joy of the season with those who are closest to you..


Mona

My Christmas Party - Sat. Dec 13th - Hotel Monteleone

Vist to Dr. Black & the Holidays

We saw Harry's medical oncologist on Friday and he said that if he did not know Harry and saw the MRI report - he would say that the patient was a diabetic that did not have it under control. Which he did not for a very long time - so we are very happy with that news.

The next step is a PET Fusion scan in January and Doctor appointments in January - so he is free and clear until then.

SO that means we can truly celebrate the Holidays and only be concerned with Friends and Family.

In fact Harry & I went to my company Christmas Party last night at the Hotel Monteleone. It was the first time he was able to attend my party. We had a great time.

So if I do not post quite as much over the next few weeks - don't worry - we'll just be celebrating the gift we have been given and enjoying the company of friends and family.

May you and your family be as blessed as Harry and I have been this year.

Merry Christmas!

Mona

MRI - Doctor Update

Harry had an MRI yesterday to see if the spot on his liver was cancerous,, I am very happy to report that we just got back from Dr. Monsour's office and the liver is clear. It is not cancerous.. Another early Christmas Present..
He has another appointment with his medical oncologist tomorrow - but it looks like we can enjoy the holidays without any obstacles...........

Merry Christmas Everybody...

Mona & Harry

Saturday

This was taken on Saturday afternoon at the Barnes and Noble on the West Bank. He sat in for 1 set - but he played great and sounded great. His Mom was even there to witness. Then we went to the Besh Steakhouse at Harrah's and had a fabulous dinner.

Sunday we set up the Christmas Tree and will spend the rest of the week decorating for family and friends... But to be honest with you I got my Christmas present on Saturday.. just watching him play..

Mona

Friday -

I spoke with Harry last night and he sounded great. I fly home tomorrow morning and we are planning to go to a Benny Grunch gig so he can sit in for a while. But otherwise he is in a great mood - so if you have not called him lately - please do..

Thanks for all the support..

Mona & Harry

Thursday

I am still in Miami but talking to Harry everyday - he is doing very well. Yesterday he and his Cousin Mike went

Then they went to my favorite restaurant Mandina's and Harry had an Oyster PoBoy - he is looking forward to raw oysters he just can't have them right now...

He was a little tired last night - but he seems to be able to do a little more each day.

He has an MRI next Wednesday and then Dr. Monsour on Thursday and Dr. Black on Friday.

More when I have more..............

Mona

Sunday

Harry is getting better everyday - food has done more for him than anything else lately. He is looking forward to Wednesday with Benny Grunch and finishing the new Christmas video. I am going to Miami for work until Saturday. So call him up and stop by to visit. Have a great day and I will continue to post during the week...

Thanks for all the holiday wishes...

Mona

Thanksgiving Day

Thank you to all who shared this lovely day with us..

Mona & Harry

Happy Thanksgiving Everyone!

Shopping & Cooking

After Harry & I had lunch yesterday he went to the Thrift Store and Grocery Store - he calls it exercise - I call it fantastic - he's been inside so long. I then got home from work to a cooked dinner, he was a little tired after all that. Today is a day of rest and tomorrow is a day of Thanksgiving, we surely have a lot to be thankful for.

Happy Thanksgiving everybody..

Mona & Harry

Dr. Black Visit

Harry saw Dr. Black yesterday and he is doing great he even gained back a couple of pounds. The CT Scan he had a week ago Monday showed that the tumor and lymphnodes are markedly reduced (some have been reduced by half). They did find something they want to look at on his liver - so he will have an MRI in a couple of weeks to find out what it is.

So after many months I am happy to report. Harry is starting to feel like himself again. Yesterday we walked all over the hospital - dropping off little Thanksgiving gifts. Harry cooked our steaks last night and he is going to the thrift store today.

We are so looking forward to the holidays and more continued good news.

Mona & Harry

Weekend & More

Harry's eating is not a fluke... He has even asked for a steak dinner tonight!. Harry has an appointment with Dr. Black today his medical oncologist. I'll post about what he says later.

Harry is even talking about going to the thrift stores - one of his favorite pastimes. I am hoping that he will start playing the drums at home so he can build up enough energy to play some gigs.


There are sometimes very unintended consequences when this kind of illness strikes, Harry & I are closer than we have ever been. Our family and friends have showed us such love and support. And in the medical community we have been graced with great doctors and caretakers.

I know how lucky Harry and I are to have so many loving and caring people in our lives but I would like to let my sister's and their husbands and my brother and his wife know just how much they have meant to us. You've been constant sources of strength and support for both of us. Karen, Mac, Missy, Raymond, Mike and Michele - I hope you know what you mean - even though I sometimes forget to say thank you. BTW Raymond your tub handle has come in very handy this week as Harry has changed from showers to baths.

To Harry's Cousins - Mike & Joyce and Mike & Jan and their family - Harry is so happy and proud that you are in his life.

To Harry's Mom - Joycelen - I am so happy that the two of you have been re-united.

May God grace all of you with the same gifts he has given us: Harry eating, and family and friends like ours, you are all worth your weight in gold.
Happy Thanksgiving..

Mona

Friday was another good day

Harry had pizza, ice cream and chicken and rice and gravy yesterday! I am still crossing my fingers but it seems eating is easier everyday.

Mona

Yesterday was a great day to me!

Last night I cooked chicken and rice and gravy and WE sat at the table and ate. Then Harry had 2 small bowls of chocolate ice cream while we watched a movie. When I called him around noon he had eaten a tuna fish sandwich. He is still weak but he seems to be progressing a little more in the past couple of days. I am keeping my fingers crossed.

Mona

Good Day - Sad Family News

Harry had a good day yesterday but we received some very sad news yesterday, Harry's cousin Janice Ravain lost her dear Mother yesterday. She went very peacefully after a brave fight with Lymphoma, We have grown so very close to Janice and Michael over the past few months and without them around our lives would be so very very different. Our hearts go out to them and their family. Please keep them, Cal Arnold's family and Emile Guess's family in your prayers...

Mona

Wednesday

Harry has good and bad days still as his body is adjusting to all the ups and downs he has gone through. In the beginning - talking was painful and difficult but now if you wish to call him - please do. He may not always answer, and I would not call until 10am or after 8pm. He still tires quickly but I think hearing from his friends would be a good thing.

Mona

Good News

Even though Harry is not having a great day (I think it had to do with all the chemicals he had to drink yesterday). We saw his progress today. Dr. Monsour showed us the scan Harry had when this started and the one he had yesterday - what a remarkable improvement. In fact I would say that Dr. Monsour was very proud of his work and he should be. The scans almost look like they are of 2 people there is such a difference. We are not through with the battle but the first skirmishes were victories on our side. Dr. Monsour also said there will be more shrinking as time goes by. We have another appointment with him in one month and he should schedule a new PET scan then to give us an even better idea where he stands. But this is the first concrete proof that the battle Harry has so bravely waged is working. The scan did say something about a spot on his liver but Dr. Monsour showed us the original PET scan and that spot was there and did not show as cancer so he does NOT think it is anything to be worried about - but he said that Dr. Black would probably order an MRI just to be sure. I thank GOD everyday for this wonderful caring and compassionate doctor he put in our lives. He has never sugar coated the truth, listened truly listened and gave us the strength and courage to continue on the bad days and patted Harry on the back on the good days. A couple of new meds today to control some coughing and walk Harry all the way down off the pain meds.

So I am working downtown the next few days - it might be Friday night or Saturday morning before I post again..

Wish us luck and pray for us - we are trying spaghetti tonight........

Mona

Another Full Day

Yesterday Harry had a CT Scan of his Chest, Abdomen and Pelvis. We have an appointment with Dr. Monsour at 11am today - I do not know if he will be able to retrieve the results - but I hope so. If not we will get the answers Monday afternoon when we see Dr. Black. He will also get blood work today for both Dr. Black and Dr. Jeanfreau.

And believe it or not Harry ate half of a medium cheese pizza yesterday afternoon! This morning he was a little nauseated but I guess that is expected. He took a nausea pill and went back to sleep. Up again he is not feeling so good. maybe a little more sleep will help..told him to go back to sleep..

And thanks again to my brother Mike for visiting and helping out this weekend..

Mona

Monday Morning

Harry had a good weekend, he went to services on Saturday with Johnny Vidgini for Emile Guess. Harry truly revered Emile and will miss him terribly. Our prayers are with his family.

My brother Mike came to visit from Houston, thanks for being here for us. Sunday, Harry and Mike, my brother, came down to the Marriott where I am working and watched a political debate with Sen. Fred Thompson and James Carville.

Harry has been a little tired - but he's been out everyday for the past week except Thursday.

Today we go for a CT SCAN of his chest and abdomen and hopefully we'll have some news about how things are really going by next week when we make our next round of doctors.

We were also very saddened by the news of another dear friend passing away, Cal Arnold left us to join the musicians in Heaven last week. Our hearts, love and prayers go out to Nancy, his wife and his entire family.

Mona

Cousin Mike, Grand Cousin AVA, Cousin Harry

Video Shoot

Harry is out with Benny Grunch today shooting new videos. I am not sure which song they are shooting - but I am sure it will end up on you tube after airing on Frank Davis.

Yesterday was an up and down day. He ate part of a po-boy yesterday and asked for PB&J sandwiches today for the shoot..... He's hanging with his cousin Mike today.

Tomorrow Harry will be with Johnny Vindigni attending the services for Emile Guess. It will be a sad day for all..

Thanks for the prayers..

Mona

Laundry

Now I know this may not seem like a huge triumph to anyone but me, but I came home yesterday to find the laundry washed, dried and folded. I was so overwhelmed that he was able to do that after the past few days... Amen....

Mona

More Ups and Downs, more up today

Harry had a very bad day on Friday. Things have picked up quite a bit since then. We have seen 3 doctors in the last 2 days and they have adjusted some of his medicines and that seems to be working. He is still not eating the way he wants to but we have found a nutritional supplement that is finally succeeding at getting him to better health. He is stepping down on one of his pain medications and has completely gotten off of the other. Today is the best I have seen him since June. He will have a CT Scan of his chest within the next 2 weeks and then we see his oncologist to find out where we are and when we start the next round of chemo. It is my understanding that when we start that it will be 1 time a week for 3 weeks, 2 weeks off and then the same routine for a total of 3 rounds of full chemo. He will have to have surgery to put a bard port back in - but he came through that with flying colors last time and I expect nothing less this time.

Over the weekend we were blessed to have my sisters and their families, Harry's mom and Harry's cousin and his family for a BBQ. And even though he was tired - he really really enjoyed the company.

Thanks again to all

Mona

What a week!

This past week has been the most up and down I think we've had. Today is a very up day. Harry and I went to eat at Fiesta last night. Now he did not eat a lot but he did eat. He woke up this morning and was talking about eating eggs, bacon and toast for breakfast and how he was going to fix it. He also realizes that he no longer fits in any of his clothes - so he is planning a trip to Walmart for jeans and maybe even Academy. That's a lot for him and he knows he will probably be tired tomorrow. But if we get out a little every day.. it can only help.

I cannot say this enough - if you or any member of your family is ever facing a battle that requires radiation oncology - the only Doctor you want is Dr Paul Monsour at EJGH. He and his entire staff are the most caring, confident and concerned I have ever met. For Harry going to that office as we did on Tuesday is like a HUGE B12 shot.

Harry is so looking forward to playing music again - if things keep going the way they have the last 2 days - it could be sooner rather than later...

Thanks again to all.......................

Dr. Monsour

We saw Dr. Monsour yesterday and discovered that the pain Harry was feeling around his heart is pericarditis. It is treatable by taking advil - so that is what we started last night and it looks like it is working. We go back to see him in 2 weeks and he said we would do tests to see where we are when he is out of pain. It was great to see all those guys again, Harry really enjoyed seeing them again. Dr. Jeanfreau also started Harry back on his heart medications. Harry also asked about going out to a restaurant tonight for dinner, so we'll see how he feels today. I am not going to say we turned a corner but I think that Dr. Monsour again worked his magic and relieved some of Harry's fear about his progress. So I will post again soon.

Mona

After the Weekend

Harry had a great day on Saturday. But we are still having a nausea problem and his pain is becoming a little more prevalent. I am calling his doctor today to see if there is another nausea medicine they can give him - the very expensive one they gave him for during chemo worked the best. So we are looking for something in between. We go to see his radiation oncologist tomorrow for his 1 month visit. And we see the rest of the doctors next week. So I will update again soon.

Mona

Day 4

We had a few challenges yesterday but I think we have overcome them, one of the biggest is nausea. I found some nutrition that has no lactose in it and he seemed to be able to hold that down better than all the other things we have tried. I think that he may have become completely lactose intolerant - which is not uncommon and could reverse but after 4 hours of research on the web - I found some products that should be able to keep his nutrition up without lactose and gluten and I am working on others but for the time being - no milk or dairy products.

Today Harry is out with his cousin Mike from LaPlace and a newly discovered relative named Bob while I am working. What a grace from God that Mike and Janice Ravain came back into our lives right as we were beginning this journey. I am sure he will be completely exhausted by the end of his day but what a fabulous boost for his spirit to get out... Mike - I cannot thank you enough..

I will post again after the weekend.

Day 2

Good Morning all,
Harry is doing very well at home. He was able to eat a few soft things yesterday and he seems to be swallowing better everyday. He threw up right after we got home but has been able to hold everything else down so far. He was sitting downstairs when I got home from work yesterday and we sat up until 930pm. He begins seeing doctors again next week and the following week. At some point he will need to have surgery to put a port back in for the next round of chemotherapy but I think we are at least 3 weeks away from that. We celebrated Harry's 60th Birthday and our 10th anniversary during his 21 days in the hospital but he is clever enough to have had the jewelry store deliver my gift to him at the hospital so that he could give it to me there. Thank you all again for your prayers, we have come through another challenge with flying stars.

Mona

Harry is Home

I will update with more information later but I brought Harry home from the hospital late last night.

Mona

Fabulous News....................

Harry is making progress in leaps now - not just baby steps. In the last few days he has eaten Taco Bell, Bud's Broiler and Krispy Kreme oh yeah and some hospital food. He really is not eating enough to sustain him so we are adding Glucerna and Pudding to his diet. We were also told this morning that he has 4 more days of antibiotics and then depending on his eating and pain we should get to go HOME!!!!!!! Today is day 19 and he is finally talking about missing being at home. So thank you again for keeping us in your prayers, we could not have survived this round without you.

Dr. Black also told us he would give him a break from the hospital before we start chemo again. Yesterday - they put a PICC line in his arm and took the IV out. They can use it to give him his chemo. So again thanks...

Mona

Very Good Night

Harry had a very good night. He was able to eat a few things so they are changing his liquid diet to a soft foods diet. The endoscopy yesterday went well. They confirmed that there were no strictures and spasms, he simply has a very bad case of esophagitis. It will just take time for him to heal. The healing was considerable from last Friday to yesterday. He is drinking without straws - and that is great. He ate a few bites of scrambled eggs, hash browns and a bite of bacon for breakfast this morning. They have called in a neurologist to see him about the shaking in his leg and hands - it is much better but while we are in the hospital - he just as soon check it out. So now we have to see how the eating goes, how much longer he needs antibiotics and then readdress the bard port and whether it will go in before we leave the hospital or later. Yes I think we can finally see him going home - probably next week.. so the light is at the end of the tunnel I think. He did have a coughing spell this morning but he was not in excruciating pain when it happened. It hurt a little after but they were bringing him his pain medication when I left. So I am very hopeful.

Mona

Another Procedure

Harry is going to have another endoscopy today to see what is going on down his throat now that they know he can go all the way through. That should happen later this afternoon probably around 2pm. He will be without a central line or port for at least a day or 2 while they re-clear up the infection they cleared up last week. So he will be on a lot of antibiotics for a while longer. During this procedure today they may also doing a procedure like an angioplasty to widen his throat if there are any strictures. But we won't know where we are headed until they complete the procedure today. Also if the infection clears up completely they may take him back to surgery to re install a port.

So as usual we are in a holding pattern.

Thanks again for everything..

Mona

Surgery Went Great

Harry had surgery this morning to remove his bard port. When they removed it they found liquid around it and they are doing a culture to see if it was causing the infection. I am not sure how we move forward from this - but the surgeon - told me about a couple of things they could do but putting a port back in the same place is not an option at least right now. He was resting comfortably with his cousin sitting with him when I left around 1pm.

As for the swallowing and pain, it is still pretty bad and at some point this week they will be doing another endoscopy to find out what else is going on besides the swelling from the esophagitis that was caused by the 35 radiation treatments. They told me today that not only is his esophagus is swollen but he is also having spasms in the lower portion of the same. He was however able to eat some pudding last night without choking and it was actually easier than the water he has been drinking.

We have no idea how long this is going to take, whether or not he will have another port put in or just a central line. We do know they are saying he won't go home until he can eat. So pray for all of this swelling to go away. He is in remarkable spirit for all he has been through and that helps me get through the day.

Thanks to all of you for your concern, love and prayers.. we appreciate all of them. I will post more when I know more..

Love to all

Mona and Harry

Update

We may not be removing the port..They may also be re- doing the endoscopy they did this morning. I will know more on Monday. Until then we are in a holding pattern.

Mona

Friday, October 17th

Hello all,

Harry's esophagus is almost completely swollen shut. They had to use a pediatric tube to look. They have no idea how he ever got any food down. Also he now has a staff infection in his blood so they are going to have to remove his port. Give him just fluids until they can rid him of the infection and then they will put the port back in so they can begin feeding him again, they have not said anything about a stomach tube yet but he will be here for a while until he can feed himself. I will update the blog later with more information. But his spirit is good. So look for more later

Mona

Thursday, Oct 16th

Harry is having a procedure in the morning to see if they can find out why his pain is still so predominant. It should be short and sweet and maybe we can finally get some answers as to what is going on.

Say your prayers tonight - that they figure this out and have a solution.

Mona

After Lunch, Oct. 14th

I just got back from the hospital and have a little more information. As you all know when this started Harry's disease was very advanced (Stage 3B, the next stage is 4 which is the most difficult to work with). So all the symptoms are just that, they are from the disease itself, the medications, the radiation therapy and the chemo. But in his last blood work they did find an infection somewhere and he is now on an IV antibiotic and let's hope that regulates his temperature and as long as he is being fed IV - his blood sugars will be high. He is having a little trouble today eating but we are not going to give up trying. Anyway - that is the latest - I will post again in a day or two.

Mona

Tuesday, Oct 14th

Some Good New! Harry was able to eat a little at lunch and dinner yesterday. He did say it was backing up a little this morning... I hope that is just because he is not used to eating anymore and that it will lessen as the days go on. They are having a terrible time regulating his blood sugars because of the TPN, which I think is leading to the sweating problem, however we made it through the night before we had to change the bed. He showered this morning - so that was good. Yesterday they also did a CT Scan of his brain and another chest xray. The scan we believe was because since Sunday his left leg and hand have been shaking - not consistently but he is not controlling it, I do not have the results at this time - being at work all day I miss the doctors. Dr. Black did go by yesterday and told him not to plan on going home soon. I am not sure what that means but hopefully a doctor will pass one day when I am there.. Anyway that is the latest. Thanks again for all the prayers.

Mona

Monday, October 13th..

Harry is still in the hospital. He has good days and bad. He had a bad day on Saturday and a good morning and afternoon yesterday but last night was a little different. He was sweating quite a bit and we changed the bed out several times. We're not sure what is causing this but maybe when the doctor comes back today we'll get some answers.

He did have a great afternoon, his mother, cousins, sister and brother in law and some very dear friends came by for a visit. He really enjoyed the company.

Well, that's it for now.... I will update more after the doctor passes today.

Mona

Friday, October 10th

Harry is doing well in the hospital. They are still feeding him intravenously and they are taking blood everyday and adjusting his nutrients. He is now drinking with more success but the jello at lunch had fruit in it and it went down but not so easy. He put 2lbs back on from the 32 he lost. He was able to take a shower this morning. But we are not rushing his leaving the hospital. He has talked to his doctors about staying until he really can eat. I suspect we may be in the hospital until next weekend but I am not sure. I will update again after the weekend.

Mona

Wednesday, Oct 8th

Harry had a very good birthday - even though it was in the hospital and he could not eat his cake. Thanks to everyone one who called, you really made his day. Thanks to all those who visited, he really enjoyed your company. Mike & Jan - you really made it special.

Well, this morning they started him on IV food, they did not want to put a feeding tube in they said it was only another site that could get infected so they are feeding him through the port where his chemotherapy is administered. I saw him at lunch and he was in a very good mood, he even said he felt the food in his stomach already. I do not know how long we will be in the hospital but I am assuming it to be about a week.

He also was able to swallow some water without choking - and that is a miracle. Anyway I will update with more in a day or two.

Thanks for the prayers..

Mona

Monday, Not so good

Harry is back in the hospital. He has not eaten since last Thursday night and is having an extraordinarily difficult time swallowing. The pain is mostly gone but even water is difficult to swallow. So for now we are back at hospital.

He has not seen the doctor yet today but I will update blog tomorrow when I have more information.

Mona

Friday, October 5th

Harry is still doing good. He has completely eliminated one of the pain medications - and is not in constant pain. He is more alert when awake than he has been in a long time. But he is resting, as he calls it, most of the day.

The big day is around the corner. He will turn 60 on Tuesday. Still have not decided if we will celebrate now or later - it is a day to day thing.

I think we are getting a lot closer to seeing you out and about. Again thanks for all the prayers.

Mona & Harry

Boy What a Difference A Day Makes

Harry had a very good day yesterday. He completed his radiation therapy and even got a diploma. We also saw Dr. Black, his medical oncologist. Harry will not have any treatments until after October 21st. They want his body to heal. We know for sure that the tumors and lymph nodes have shrunk. We have also been told that the radiation continues to shrink the disease for the next few weeks. So while we are looking forward to the break he does have an appointment with Dr, Jeanfreau on Oct 9th; Dr. Black on Oct 21st and Dr. Monsour on Oct 28th, with a round of blood work on the week of the 14th.

Harry even told me yesterday that Dr. Schuette said knows Harry is getting better because in his experience when women get better they get happy and when men get better they get grumpy (while Harry has not been grumpy - he has returned to having an opinion on everything, including telling me how I have put things in the house in the wrong place).

As for the sweating we were concerned about Dr. Black changed around his pain medication doses and we will see how that works, but he slept in the spare bedroom last night and for some reason - no sweating. Don't know why - but both of us were very happy about that.

He has not been eating as well because it is hard to swallow but like Dr. Black said yesterday - it did not take a week for the swallowing problem to come on so don't expect it to go away in a week.

So don't be surprised in the next few weeks if you see us out and about - that's what I am praying for and the preparation for round 2.

Love to all,

Mona & Harry

Tuesday, September 30th

It has been a very long road so far but today is Harry's last radiation therapy treatment. Due to the power of the radiation he can never have it again for this cancer. He will miss seeing the therapy guys every day but we are hoping that the ability to swallow starts getting easier.

He did not have a very good day yesterday but he had chemo and radiation, so it was also a long day. He was not very hungry yesterday either. I bought some gatorade for him yesterday because he is sweating so much that we need to replace the fluids. Today we are going to see his medical oncologist Dr. Black, to try and determine what is causing the sweating.

He now has his own little hotel suite. A friend of mine,Darren, helped me get a small refrigerator/freezer to his room (boy does he love having that) and later I moved our microwave upstairs as well. So he is pretty set up.

So today we have a doctor's appointment and radiation and then we should get a break for about 3 weeks. I will post an update sometime tonight and let you know what the doctor says..

Take care and thanks

Saturday, Sept 27

Good Morning;

Harry is doing well. He has 2 more radiation treatments so that will end on Tuesday and he is having a chemo treatment on Monday. Then he is supposed to have a couple of weeks or so without treatment - that is up to Dr. Black. He has been told that the 2 weeks after radiation could increase pain. But for now his pain is under much better control than it was before the hospital. He is sleeping a lot but when he is awake, he's awake. He is eating better and that's a good thing with all the medications.

Thank you again to all of you who called or visited during his hospital stay -

Keep praying.....

Mona

Thursday, Sept 25th

We are home from the hospital. I am swamped right now but he is good. Eating again and a new slew of medicines I have to figure out before I miss one - 2 pharmacies to get it all.. Anyway I will write more later - just wanted you to all know he was home..

Mona

Wednesday

Good Morning all,

Good new Harry is back eating solid foods. He is sounding stronger every time I speak with him. It also sounds like his pain is getting somewhat under control. So from what they are telling me he should be going home in the next day or 2. He has been getting his radiation treatments while in the hospital but he has not had a chemo treatment.

Thank you to all who have visited him in the hospital, he really enjoyed that. I am heading back to New Orleans in the morning and land before noon.

My next post will not be till I get home.

Thanks again to all,

Mona

Monday, September 22

Harry is still in the Hosptial. He had a very busy weekend. My sister's, Robert Wilson, his mother, Joycelen Adams, Andre Neff and his cousins Mike & Jan Ravain all came to visit or stay with him to help. He enjoyed it but he was very tired.

He is still having difficulty swallowing and he now has a Gastroenterologist. He is now getting Nexium in an attempt to help him swallow. I spoke with him this morning and he was heading to Radiation Therapy. I will check with him again soon and see if he is having Chemo Therapy today as well. If he can't eat soon - we may have to put in a feeding tube - but that is not definite.

Ms. Grace Jackson is sitting with him and he already is betting with her on when the phone rings - if it is me or not and I think Harry is winning. Harry has his cell phone so you can try to call he may or may not answer...

I will post more later tonight after I speak with his nurse and let you know.

Thanks for the prayers - we need for him to be able to swallow..

Love to all

Mona & Harry

Friday

Harry is doing much better today. They have completely changed his pain medication drugs and routine - for the first time since this started he went 4 hours without medication. They have changed his insulin, and all his heart medications have been stopped for the time being until his vitals all come back within range. He is still eating a clear liquid diet - but he is eating and the swallowing is better. They are not doing any radiation treatments until Monday - so we have 7 left. As for chemotherapy - i will have to talk to the doctor again. He will be in the hospital for a few more days.

My sister's and Andre are going to help throughout the weekend and then we have a sitting service until I get back from Philly.. I will update as often as I can..

thanks

Mona

Thursday Night

Harry has been admitted to the hospital. He has been dehydrated and having difficulty swallowing so Dr. Monsour thought it would be best that we get into the hospital so they could build him backup. We have not seen any doctors yet - we were in the emergency room from 230pm - 930p before they moved us into his room. We are at East Jefferson General Hospital. I do not know how long he will be there, but it should be a very short stay. He is going to be just fine - in fact after the first bag of saline, he was much better alreay. I have to travel on Sunday and I am in the processing of hiring a 24/7 sitter until I return on Thursday.

I will post again tomorrow night..

Thanks for everything
Mona

Good Days - Bad Days

Harry has not really felt good since last Friday. The weekend was quiet and he did ok. Monday was not so good. Tuesday was better. Yesterday he drove himself to radiation. These are the ups and downs you all hear about. Our biggest problem is eating right now. Mashed Potatoes last night were like sand - even liquid supplements he is having trouble swallowing. He has been trying to rest but that's difficult when you are getting up every 2 hours for pain pills.

So we are doing ok - this is just a rough patch. He has a total of 7 more radiation treatments and hopefully after that the swallowing and pain will go away. He also has 1 more half chemotreatment, then he gets a few weeks off before they do a full round of chemo.

Thanks again to all

Sunday, September 14th

Hello all,

Very slow weekend, Harry's stomach was not quite right all weekend. He is beginning to stretch out the pain pills a little - so that is good also... overall slow but good. He has another Chemo treatment tomorrow..

For all of you who know my brother - We made it through another storm. He graciously gave us refuge during Gustav and then Ike visited. He lives in Seabrook, TX. Yes the one you have been seeing on the news. He was under a mandatory evacuation and they all got out. It appears that their home is going to be ok. No Flooding in his neighborhood, lots of wind damage but he has no trees - so that is good. Until he gets back to Texas we do not know for sure what or if he had damage. I will update you more after he gets home on Tuesday.

God has watched over all of us and I am really glad he spared our home for Gustav and their house for Ike, but it's kind of a replay - only the last time it was Katrina and Rita.. my brother and I need to quit tempting Hurricanes.

Love all,

Mona

Friday, Sept 12

Good Morning All,

It looks like we are going to avoid having to evacuate for IKE - but while we were out yesterday afternoon - the winds had already picked up considerably. We are expecting heavy rain bands and winds today.

Now for Harry news. Wednesday he went shopping on his own, to the doctor on his own, and did all the laundry and dishes... He was very tired on Thursday but otherwise he did fabulous. Today he is driving himself to the doctor again. I still plan to go with him on Monday's (chemo and doctor day) but other than that - he is capable of making that trip on his own. PROGRESS!!

Anyway - we are expecting to have a quiet weekend.

Everyone stay safe..

Mona & Harry

Wednesday, Sept 10

Well another new event.. Harry recorded scratch vocals for Benny - last night - 1 take.. He felt pretty good after.

Long chemo treatment yesterday, he tossed and turned most of the night, but he got up this morning, showered and ran a few errands and then drove himself to radiation. He sounded pretty good the last I spoke with him.

Hopefully he did not tire himself out - It really looks like we are moving forward..

Thanks again for all your prayers..

Mona

Tuesday, September 9th

Well all seems to be going very well. We are about 1/2 way through the radiation therapy. We saw Doctor Black yesterday -the medical oncologist, Harry will have 3 more low dose chemotherapy session and then approximately a 3 week break and then a full round of chemotherapy. We won't know until they take more scans at the end exactly how many more chemotherapy treatments to expect.

We see Dr. Monsour every Monday - they are going to shift the radiation a little to get it away from his spine and esophagus and maybe help his swallowing. Harry has lost about 25 lbs but they do not want him to lose anymore because of his immune system - so we spoke with a nutritionist yesterday. They are happy to let him keep off the 25 but do NOT want him to lose anymore until the treatment is over.

Harry is very happy with the loss though - he is a lot less lethargic and he feels much better.

Harry also recorded with Benny Grunch last night, for a new album in December, it should be great as usual. You can find information on the band at www.bennygrunch.com. Benny has been a true friend to Harry and I both through all of this and we love and appreciate him for that. This was the first time Harry has played drums since he got sick and he tells me it felt great to play.

We have someone coming to look at the roof today - to see if we have any leaking issues and get an estimate of repair - and it looks like we just might escape the wrath of Hurrican IKE. Let's hope it misses Mississippi, Louisiana and Texas completely.


Thanks for the prayer - they are working and we appreciate it ..

Love, Mona & Harry

Friday, Sept 5th

Hello all,

Just thought I would give you an update. Harry had radiation therapy yesterday - it was great to see that all the people who are helping Harry came through the storm ok, we actually missed seeing them.

I thought you should know that Harry spent most of the day writing a song. He has not done that in a while - boy was I glad to see that. He also was taking apart one of the drums he wants to have repainted for the new album cover. He even has a session to cut one track coming up. So since we have returned - he is definitely more active than he has been.

We should hear from the other doctors today or tomorrow and get back into chemo next week.

Thanks for all your prayers - he feels them. And we know that it is working.

Stay safe and we hope all of our friends in South Louisiana are well and home.

We're Home - Thursday

We made it back from Broussard last night. There are quite a few roof shingles in the yard but we can't figure out where they came from yet. We have a few things in the yard to pick up but we have electricity; cable; phone and water.. so we are doing just great. Harry is going to have a radiation treatment today. We are waiting to hear from the pulmonologist and the medical oncologist today or tomorrow.

Thanks to my brother and his family for their hospitality in Houston; to my sister Karen and her husband in Broussard for their hospitality... and to my sister Missy for making it through all this safely.

Thanks to everyone for being concerned..

Mona & Harry

Tuesday after Gustav

Hello All;

We have no information on our house as of yet and we are still in Houston. My brother and his family were very gracious in putting us up in such a hurry. We will probably head to my sister's in Broussard later today so we are closer to home and getting Harry back into treatment. He is supposed to have radiation therapy today and chemo on Thursday - but I do not think that they are going to let us back in until tomorrow anyway. I will keep you all updated.. take care..

Mona

We're In Texas

Last night about 1030pm we departed New Orleans and headed to Texas. We spent the night in Sulphur and then headed into Houston this afternoon.. Reason we headed here - our hotel in biloxi was closed at noon today. We are at my brother's and will be here until it is safe to head back home..

Saturday, Gustav is coming

After much hesitation - we have decided to evacuate to Mississippi. We will be at the Grand Biloxi for at least a couple of days...Harry is ok but not great -I am finishing up the clothes, emptying the fridge, packing etc.. We will be fine - our home should be fine - you can reach us via email or our cells...

Take care

Results from CT Scan of chest

We went to get Harry's radiation therapy early today as everyone is trying to head out either for the holiday or hurricane. Harry saw the doc in the hallway and he said that it was shrinking. I have no further details. I don't know that if it means lymph nodes or tumors. I don't know by how much. And probably will have no further details until after Tuesday or Wednesday since we will see no doctors until next week.

We have not made any decisions about evacuating yet - we will do that as it(Gustav) gets closer.

But we'll let you know

Friday - Gustav and other stuff

We had the CT Scan of his chest yesterday, but we will not have results until this afternoon. He is still staying in bed until the doctor's visits but we did go out to dinner again. He is now into soups because of the swallowing.

Because of the storm of which no one knows where it is headed they have moved his chemotherapy treatment next week to Wednesday instead of Tuesday. And we have plenty of places to go in case this thing moves towards us. We also could end up with a lot of people at our house if Gustav heads towards Lafayette. Even though he won't be active - he says he'll be happy to have people in the house - especially if he knows they are safe.

Well, I need to make my hurricane list of purchases and medicines to pick up.. so I will post tonight when we find out the results of the scan..

Keep Praying

Mona

Thursday... waiting on Gustav

Hello all - well we had a decent day yesterday. Monday was not much better that the weekend. On Tuesday Harry had his second infusion of Chemotherapy - still no nausea Esophagitis is starting to appear, making it difficult to swallow, but we have 2 new medicines for that (don't ask we are at way too many). The pain is still very evident but is being controlled by mediciation.. his is taking it every 2.5 - 3 hours for the chest pain but the headaches pains are no where near as bad as they have been. We have however been able to go out and eat at night after treatment - so he is up a little a day. Today Harry is going to have a CT Scan of his chest at 4pm; blood work at 4:30pm and radiation at 5pm. I do not know when we get the results but we will let you know. We will also let you know if we are evacuating for Gustav or not as the week goes on. That will all depend on the medicial facilities and whether they tell us to stay or move..

Love ya
Mona

Monday Night

Well the weekend was a long one. Harry really did not want to do anything but sleep. The chest pain has returned somewhat, the headaches are almost gone but he is beginning to have a little trouble swallowing certain things. According to Dr. Monsour - the swallowing thing is to be expected. Tomorrow is his 2nd round of chemo - so we'll be unavailable most of the day.

See you soon..

Saturday Morning

Wow - what a difference a few days make. I think we have truly hit upon the magic pain relief combination of drugs and timing. For those of you who know him well - Wednesday night he was standing in his closet - putting together complete outfits.. I have not been happier than I was that night in a while. Oh and I cut his hair - he is not losing it yet but it had been weeks, so he is sporting that cropped - almost military look.

Since the last post - he has been knocked back a little by the chemo but not a lot. No nausea medicine needed so far.

Yesterday we also went to get blood drawn - so they can keep track of what is going and again if you know him you know his aversion to needles, but the nurse "Christine" did a great job and got him on the first stick. Then off to radiation therapy we went.

After we went to Mandina's Restaurant on Canal so he could have his shrimp remoulade - this is the furtherest we've been since we started treatment and he wasn't winded or overly tired - YEAH!!!!

He is even talking about playing again - so we are definitely headed in the right direction.

Thanks for all the prayers, support and comments - we truly appreciate them.

Chemotherapy, Wed August 20th

Hello all,

Harry had his first chemotherapy treatment and other than it being a 4 1/2 hour event - he came through great. No nausea.. and we seem to have also finally found the perfect combination of time and pain reliever to almost entirely relieve his headaches. Dr. Monsour, his radiation oncologist, is also one very smart guy, He said it would take about 2 weeks (10 treatments) for Harry to get relief. Yesterday was that day - WOW what a difference. He is alert, no real shortness of breath, headache almost gone and he is not sleeping all day. If this continues, he just might be able to drive himself to all his own treatments. We were talking a little today and I want all of you to know that he truly feels all the prayers out there for him. And I know how much better he is feeling, so as far as we are concerned GOD is answering all of your prayers - so please don't stop.

Thank You for all your love and support - from the bottom of our hearts..

Mona & Harry

After Surgery

Harry made it through surgery with flying colors. He was apprehensive all day but we went to radiation therapy at 10:30am; met with Dr. Monsour for a few minutes, he checks in with us every Monday to see how Harry is holding up. After that we checked in at EJGH. They took him back to holding at 1pm and then at 3pm Dr. Karlin, the surgeon, came to let me know that Harry had made it through just fine. We left the hospital around 5:15pm. I went to pick up his new pain medication to take for the next few days, then Harry wanted Taco Bell, so we had Taco Bell. The pain meds are working and his was afraid that he would not be able to sleep on his right side, but he was off and on throughout the night. I will have to check with him when he wakes up how he is feeling today.. Well that's all for now, I have to get ready for work.. Take care everyone and I hope you had as successful a day as we did.

Mona

Surgery Today

Good Morning to all;

We are headed to the hospital a little later for the surgery to put in the Bard port. I will add a post when we get home to let you know how it went.

Mona

Sunday Morning

Harry has been having fair nights and decent days. He is more comfortable in bed so he is there unless we have somewhere to go. He is very fatigued and he is starting to cough a little bit more, but that is expected from the radiation and where he is being treated. He is still a little nervous about the outpatient surgery on Monday but he will be just fine. They moved his surgery up from 3pm to 130pm - so that should make it easier on him - he has to fast after midnight.

If you looked up cancer side effect or radiation side effects - he is having all of them except nausea right now. None of them are severe but are there. The big one - is the food tasting good one day and not the next; his taste buds are changing daily - so no pre-cooking anything. Yesterday - he wanted and had salami on white bread with barbeque sauce and he got it I am just glad I did not have to eat it.

Because he is in somewhat less pain - when he is awake, he is more awake and he is eating better..

Well, that's all for today unless something happens - next post will be after we get home tomorrow night from surgery - it will probably be a late night or early morning post.

Have a great day !
Mona

Medical Summary

I forgot that I had promised to give a history of what has gone on so far so here it is.

Back in January or February of this year - Harry had a swollen gland in his neck, he went to the doctor, they gave him medicine and it went away. We thought nothing further about it.

Then in April or May he started getting constant headaches and was having some chest pain. He started taking aspirin on a daily basis and they would go away. Towards the end of May and all during June he started complaining to me about the headaches and how he never had to take so much aspirin.

At the end of June - I told him to call Dr. Pereda and have him put in him the hospital for a complete physical or whatever it took to find out what was going on.

On July 3rd - he saw Dr. Pereda who thankfully ordered a full blood workup and chest XRAY.

On July 7Th, we had the blood work and chest XRAY done. On July 8Th, I flew out to a job. That same day Dr. Pereda called him and told him they found either a cyst or nodule behind his breast plate and they wanted to do a CT scan of his chest to see what it was.

On July 10Th - while I was out of town he went for this scan. The headaches were still very predominant so he was given the first round of pain killers to assist with this and we requested that he have a CT scan of his brain.

On July 13Th, I returned home and we went on July 14Th for the CT of his brain. That afternoon we got a call from Dr. Pereda who told us that this was a serious condition and he was referring us to another internist in Metairie (Dr. Pereda is now practicing in Kentwood and felt like he was too far away to lead the efforts here) so he referred us to Dr. Wallace Jeanfreau. He also changed his pain medication to Tylenol 3.

We saw Dr. Jeanfreau for the first time on Friday July18Th. He gave Harry a physical, checked his prostate(no problems) and told us he was referring us to a pulmonologist for further treatment. By this time we knew it was cancer but no one would say it because of the legal requirements.

On July 21st we met with Dr. Matthew Schuette at Southshore Lung Center, again no confirmation of the cancer but the films made it pretty obvious what we were facing. He prescribed us Darvocet because the pain was still severe. He referred us to 2 separate doctors, they are Dr. Paul Monsour, our radiation oncologist, to see if would start radiation without a diagnosis and a Dr. Ken Smith, another pulmonologist who has a new bronchcoscopy toy that had a lesser risk of causing a lung collapse during biopsy.

We saw Dr. Monsour on the July 22ND, while we were at the office he went and met with Dr. Smith and they decided not to start radiation until they had the biopsy so that they caused no additional harm. But he ordered a PET fusion scan for Monday July 28Th.

We were scheduled to meet with Dr. Ken Smith on Friday July 25Th and get an additional CT scan of his chest but he was in such bad shape we went to the Emergency Room instead. At the emergency room they did an ECG, blood work, CT scan of his chest, Chest XRAY etc.... he ended up being OK. He quit taking the Darvocet that day. He went back to the Tylenol 3 and ibuprofen that day.

On Monday July 28Th, we went in for the PET fusion scan and then finally went to see Dr. Ken Smith. He told us that he was able to use the CT scan we had had on the Friday to do the biopsy and so we were scheduled for the bronchcoscope on Wednesday July 30Th.

Tuesday I got a call from Jennie at Dr. Monsour's office to let us know that the PET fusion scan showed that the cancer had not shown up anywhere but his chest cavity.

On Wednesday we arrived at EJGH and checked in. They started the procedure at 1pm. Around 3pm, Dr. Schuette and Dr. Smith came out to tell me it was Non Small Cell Lung Cancer, Stage 3B. That means that it not operable, but it is treatable and they tell me we are going to be aggressive and will not talk about prognosis. Stage 3b designates that the cancer is on both sides of his chest. There are 2 tumors in the left lung and the lymph nodes in the center of his chest and right of his chest are also diseased. It is, they believe, the lymph nodes that are causing all the pain, because they are squeezing his left pulmonary artery and probably some other veins as well. The radiation should be able to shrink these and give him relief, but it will take a couple of weeks. Before we leave the hospital Dr. Smith suggest we get and MRI of Harry's brain just to be sure that the cancer has not spread anywhere else for sure. We have an appointment the next day with Dr. Schuette.

We also get a phone call from Dr. Monsour's office to let us know that we are going to have 35 radiation treatments. Everyday Monday through Friday, no weekends and holidays. That means we start treatment on Wednesday July 6th and his last treatment should be around Sept 24th.

Thursday July 31st we meet with Dr. Schuette, he orders the MRI of Hary's brain and he refers us to Dr. Marcus Black, a medical oncologist we are scheduled to meet with him on Monday August 4th.

Monday August 4th, we meet with Dr. Black and he tells us about the Chemotherapy we are going to have, he also tells us that the MRI shows nothing. He suggests that we have a Bard Port surgically implanted in Harry's chest so they can do the chemotherapy and pull blood work through it instead of through a vein every week. It is Dr. Black's intention to use a low dose chemotherapy during Harry's radiation treatments, then probably do a full course of chemotherapy after the radiation treatments are complete. We are then scheduled for a chemotherapy class with the nurses and an appointment with Dr. R. Karlin for surgery.

On Friday August 8th we met with Terry, the chemo nurse and she went through all the side effects, nutritional things we need to know and schedule his first chemo treatment for August 20th after his port surgery.

On Tuesday, August 12th we met with Dr. Karlin. He wants Harry off all aspirin for 5 days before surgery. So we are scheduled for surgery on Monday August 18th at 3pm. Harry will have a radiation treatment before we check into the hospital and we will come home that night with no complications.

So we have been going for radiation everyday and it seems to being going very well. He is fatigued but other than that no real problems.

On Thursday August 14th, we went to pre surgical registration and although it was long it went well. Harry wants Ashley who drew blood on him to follow him everywhere and always be the one to draw his blood. She was very good at it. Then we met with the Anesthesiologist for the surgery and got instructions for Monday.

So that completes the history so far... I know it is a lot but now you know.

Thanks,
Mona & Harry

Friday August 15

Good Morning all,

We had a very long day yesterday. Went to EJGH to pre register for his outpatient surgery and then onto radiation. He is still doing well but is very tired. His pain level seems to be decreasing however the surgery is making him nervous. but he had a good night. He's still eating well and we are looking forward to beating this thing. Hopefully sooner than later.

Thanks for all the messages and support..

MOna

Hello All

This is Mona. I am going to try this blogging thing. I feel like sometimes when I send an email I miss some of you. So everyday or so it is my intention to post what is going on so that you can come here on your convenience and be updated. Again thanks to all for you care and concern about Harry and his condition.

We had a pretty good day yesterday. Changed his pain meds again - something non narcotic and he is doing much better with it.

Today we meet the surgeon who is going to put the port in for his Chemotherapy , then back to radiation therapy this afternoon. Today will make 5 treatments, only 30 more to go!

I will post a summary sometime tonight so that those who do not know the whole story can come here to get it..

Mona