Journal entry by Linda DeLuca

Paul's two month follow up appointment since November was this past Friday, January 25th. The check up went well. The swelling continues to go down. However, it hasn't gone down enough yet for him to be able to have a complete swallow. We need to give it another two months for the swelling to continue going down before any further decisions can be made on trimming down the flap. We'll be back in March for our next follow up.

There's also a dip in his jaw between where the "new jaw" meets the old. Without teeth, his lip caves in and is also making his speech a bit more difficult. He's reached a plateau with the speech therapist right now. In February we will see a Maxillofacial Prosthodontist. This will be a consultation to see if he can withstand an implant in this area. The prognosis will be reviewed in March with Dr. Dyalram during his follow up.

On February 15, he will have his six month check up with his ENT, Dr. Meeks. He scopes Paul and would be the first to know should the cancer show signs of returning. Dr. Meeks has also done these flap surgical procedures years ago. He and Paul talked over his surgery back in September. We're anxious to see what he says about Paul's recovery. 

Unless something unforeseen happens, I'll be back with an update after the March 25th appointment.  

Patients and caregivers love hearing from you; add a comment to show your support.

Comments Hide comments

Show your love and support for Paul.
Make a donation to CaringBridge to keep Paul’s site up and running.

Journal entry by Linda DeLuca

Today was Paul's six week follow up appointment. It is just amazing how well he is healing. His neck and flap had a few more stitches removed.  The swelling has gone down quite a bit. Dr. D says it will take at least six months before it goes down enough. His leg wound looks good as well. Now if you ask Paul, he thinks its looks horrible! But he doesn't remember how it looked at first. It has healed with a nice pink skin. It only has a couple black spots left but told today it should only take a couple more times with Silvadene cream and bandaging, it will be completely healed. 

Because of the swelling, his swallowing is still compromised. He has a speech therapist once a week but there isn't much they can do right now. The nurse is also down to once a week. His trach is completely closed. They didn't have to stitch it closed like they thought they would. 

Now we need to build his energy back up. He can barely do anything without getting exhausted no sooner than he starts. :(  His naps are usually a couple hours long. He wants to be able to do things around the house or work outside but can't. He does take a couple short walks during the day to get some fresh air. 

Paul and I want to give a big shout out to his sister Barbara. She came down from New Hampshire to help me out with Paul during his recovery from the hospital. She ended up staying five weeks with us. She just left this past Saturday. We both agree, we don't know what we would have done without her! She helped me out immensely. Thank you so much Barb...we love you & miss you already! HUGS!! 

Our next appointment is in two months. We finally can get a break and I can start building my sick leave back up since I'm down to eight hours. We've been going to appointments every two to three weeks since April! It will be a nice break too with the holidays around the corner. 

Unless there's a change in Paul's condition, I will update his progress next year after his two month appointment. If I didn't have to work, I think we would both get under the covers and hibernate all winter :)  We will be staying home and healing this winter. His throat still has a lot of healing and he can't talk much. 

A big thank you to everyone who's still with us on this site. Have a Merry Christmas ~ Happy Holidays ~ Happy New Year!  Talk to you next year....Linda & Paul xxxx

Journal entry by Linda DeLuca

Today was our first follow up appointment since the surgery on October 2nd. I had my long list of questions for Dr. Dyalram but she seemed to be one step ahead of me. She addressed everything one at a time. 

Paul has had this big over bearing boot on since day two. It was only removed to change the leg dressings and sponge bath time. The most difficult time was having to sleep with it on. My first question was to see if we could get a smaller, more manageable boot.  Instead, Dr. Dyalram says, "lets chuck the boot", and "did you bring the other shoe?"  Sadly we had not; we didn't expect to hear this! Paul has been doing so well with his stability while walking. This is huge; he'll be able to get back to his morning and evening walks now. He still has to have his walker just in case he gets unstable or light headed. We don't want him to go by himself right now either. Barb will be walking with him for the time being.

Our next concern was how much weight can he put on his leg/ankle without the boot? Dr. Joy, a senior resident reassured us that the fibula bone is a non weight bearing bone. Paul would not be compromised and it would not effect his stability and walking. They are correct. He's been doing great and you'd never know he lost this bone in his leg. That is until you see his leg. Now that's another story :)

Our other big concern is the "flap" as Dr. Dyalram calls it. This is the large piece of flesh that was removed from his shin area and attached to his neck. This large piece of flesh also has the blood vessels and nerves needed for the nerve graft. As well as the blood vessels connected to some live ones on the left side of his face to keep it a alive. This large piece of flesh will take 8-10 months to conform and have the swelling go down in his neck area. 

They removed half of the many many stitches on his neck and flap area. His leg wound where the "flap" was taken is healing well so far. It boggles my mind on how long this will take to heal. The wound is so large and thick. I found out the other day that the insurance will not pay for roll gauze. The will pay for 2x2 and 4x4 gauze squares but not the roll gauze. How do they determine this? :(  Needless to say, we need lots of rolls of roll gauze.  Insurance recommended Amazon. Sure enough, two day delivery with Amazon prime. I ordered 24 rolls delivered today. It relieved my stress a little :)

As a FYI, Paul has no more jaw pain. Is no longer on any antibiotics since being discharged from the hospital.  We have a swallow study appointment at GBMC in Towson next Wednesday. Then we go back to Dr. Dyalram on Friday, Oct. 26th. 
Looking forward to the weekend and Paul being able to get some much needed fresh air. Also taking Barb out for some good seafood :)

A huge thank you to Jimmy for cutting out lawn this weekend. We shouldn't have too many more. 

Thank you everyone for your continued support, prayers and special thoughts 😍 

Comments Hide comments

Journal entry by Linda DeLuca

Today went well. Pamela the OT came and gave Paul some exercises to do daily. Now to fit them into the routine :) 

It was such a beautiful day and Paul is really experiencing cabin fever. He tried to sneak out for a walk! Barb finally realized it was the back door that had closed and saw him walking up the walk way! He can't be walking unsupervised yet because of his risk of falling right now. So she yelled at him to hold up and walked with him to the end of the walk and back to the house :) Hoping the Wednesday follow up appointment will get him a smaller more manageable boot. One can hope :)

He's going to have a very busy Tuesday with the nurse coming at 9 am; finally heard from the speech therapist, she's coming between 10-11 am; then the OT is coming between 3-4pm. 

One day at a steps.

Comments Hide comments

Journal entry by Linda DeLuca

Here it is Sunday night after 10:00 pm and I'm just realizing Paul has been home five days already and I haven't had a minute to pick up the laptop to write on Caringbridge! In a nutshell, he improves a little every day; very noticeable. 

Sunday, October 7th, they removed one of the drains in his leg; leaving one for now. They also removed his trach and bandaged it up. They suture area needs to be cleaned to remove crusty dried blood. Paul is still complaining of his stomach hurting and feeling nauseous. Really not surprising to me since we go through this after every surgical procedure he's ever had.  To date the doctors are very pleased with his healing. :)

Paul was discharged on Tuesday, October 9th at 3:00pm. We had a bit of a challenge getting him into the house. He has a "walking boot" on his leg foot/leg and his balance is not the best on level ground. PT will be coming to the house to help him strengthen his leg/ankle, along with his balance. 

One of his major complaints was he never got any sleep :( Yep, anyone who's ever had to stay in the hospital knows you never get sleep because they will wake you up to give you a sleeping pill!! :)

We got some quick instructions on how to clean and dress his trach. Along with dressing his leg wound. The stitches and mound of flesh attached to his throat area only needs to be cleaned with peroxide and bacitracin. 

It's now Sunday and it's never ending. I honestly don't know how I would be managing right now with out Paul's sister, Barbara. We're changing and cleaning the trach area and dressing; we need two people to change the dressing on his leg, every other day but it's not as simple as removing one dressing and slapping another. The area is huge; it the entire length of the shin. It's also deep and very bloody. 

We finally got his walker delivered on Friday. We just have to put it together :)  It will be more for him to use outside or when we go to his doctor visits. We already have a follow up appointment on Wednesday. The week after, on Wednesday October 24th, we'll be heading back to GBMC in Towson for a swallow study. Those of you who've been following this journey since day one, will remember that Paul had many visits to GMBC for swallow studies back in 2011 and 2012. Then on Monday October 29th, Dr. Dyalram wants Paul to see a cardiologist. I have read that some of the side effects of radiation does affects the heart. I am assuming this is her motive; we will find out more on Wednesday what her motive is for this. 

Paul's trach has been a challenge with shirts, etc. Between his many sutures and the trach dressing, he can't have any material rubbing on this area. We've had to pick some specific shirts to cut the neck out to make it larger so it doesn't rub. 

We have a nurse who comes two days a week, we have a physical therapist two days a week, we have a occupational therapist who comes two days a week. Supposed to have a speech therapist since he still hasn't been able to talk with his trach out.  We haven't heard from the speech therapist yet so we will have to follow up on this soon. 

Well I am probably forgetting to mention something but it's after midnight; I have to go to work tomorrow and 6:30am arrives way too quickly! I want to thank everyone who has sent us messages of support and prayers. You have no idea how much this means to us.  Thank you to everyone for your support. 

Comments Hide comments

Journal entry by Linda DeLuca

Paul is getting better everyday. Although he has a long road ahead, it's reassuring to see him improve bit by bit. 

He was moved out of the ICU on Saturday morning and move to the critical care unit. They also replaced his tracheostomy with a smaller metal one with a cap. If he does well with it capped for 24 hours, they will remove it on Sunday. 

Today is Sunday and they changed the dressing on his leg and removed one of the two drains in his leg. The tracheostomy was also removed. They did quite a number on all the stitches on his neck. They must of spent 20 minutes + cleaning and pulling crusty skin all around. 

He's able to walk with help from the nurses and a walker for now. They also have him sit in the recliner for a few hours daily. 

Word is he will be released to come home on Tuesday. Have yet to hear what the home care will entail.

Comments Hide comments

Journal entry by Linda DeLuca

The surgery was yesterday morning. It started at 7:42 am. By noon Dr. Ord came out to let me know he had performed the tracheostomy with no problem and cut out a large portion of Paul's jaw. It was so brittle and infected, it had already broken in four more places. He said, "he must of been in a lot of pain". I confirmed, he had been in more pain then usual the last two weeks. His infection had become so rampant since he had been off the penicillin for 10 days. He took the fibula from Paul's left leg to form his new jaw bone, along with some flesh and blood vessels.  They also took some skin off his left thigh, about 8" x 4" in size.  This left Dr. Dyalram completing the microvascular part of the surgery. She connected the new blood vessels and created a nerve graph in hopes that he will regain some feeling in his face, lip and chin area. The complete surgery was over by 5:00 pm; a long nine hours! 

Dr. Dyalram was pleased that surgery went well. Paul would be moved directly to ICU and put on a ventilator. They want to keep him sedated for the next 24-48 hrs and on ventilator. This will give all the swelling a chance to go down some. 

Today, October 3rd he continues to do well. He is still sedated when I got in this morning. I got in just in time to be part of the doctor rounds. It consisted of nine doctors, residents and nurse practioners.  They all come together outside of his room and go over his entire history, surgery and strategy! It was just like the TV medical shows :-). They asked my opinion and let you ask questions.
The plan today was to take him off the ventilator. It finally happened around 3:30pm. They did keep him on oxygen. 

I finally left to come home by 7:45pm tonight.  I will be back in the morning. They talked about maybe getting him out of bed and walking tomorrow. They already have his feeding tube hooked up to a feeding drip as well.  Unlike AAMC, where he spent several times in the hospital, UMMC has been fantastic! It has helped relieve some of my stress, worried of how he would be cared for if I wasn't there. 

Journal entry by Linda DeLuca

The big day is almost upon us. We have both been quite anxious for October 2nd to get here.  We've gotten the "call" that gives us all the special instructions. We have to arrive at 5:30 am.  The surgery is scheduled for 8 hours. I will do my best to post something as soon as I have news of the outcome. I won't be able to take calls but you can text me at 410-507-2728. Or you can post here, as I get notified on my cell and can respond when I am able to.  The doctors say it's a procedure they do often and with a high success rate. Keep him in your prayers as we attempt to jump one more hurdle of life! 🙏 

Journal entry by Linda DeLuca

We had our appointment on Friday, August 3rd with Dr. Dyalram. It was decided that surgery is Paul's only option for the possibility of relief from the infection and pain he is experiencing.  The surgery is scheduled for October 2nd and will be performed at the University of Maryland Medical Center on Greene St. in Baltimore City.  For now he needs to be there at 6:00 a.m. but they will be contacting us the day before after 1:00 p.m. to change and or confirm his arrival. It will be an 8 hour surgery and he will be in the hospital for 5-7 days.  They will have to perform a tracheostomy during the surgery and it will stay in during his stay but is assured it will be removed 24 hours prior to being released. 

The surgery will consist of cutting out all of the dead bone of his jaw until they reach strong live bone. The CTA scans revealed a minimum of about 3-4 inches of jaw bone on the right side of his face will need to be removed.  He does have some Osteonecrosis on the left side but they will not make that call until they are in surgery.  They will be harvesting bone from his right lower leg along with flesh and blood vessels.  The bone will be shaped and inserted, using a plate and titanium screws to attach it to the live bone.  Since he has no blood supply to the dead area of his jaw, the blood vessels and flesh will need to be connected to good vessels in his neck area. 

He is anxious to have this done.  The infection in his jaw is constant as well as painful. He looks like a chipmunk who has a baseball in his cheek :-(  Since he has had so many bad reactions to pain medications we have been limited to what he can take. Vicodin is one of the few he can tolerate for everyday pain. It doesn't make the pain go away but it does dull it a bit.  He is constantly exhausted (with or without the pain meds). Any activity during the day requires naps. Then at night it becomes difficult to sleep through the night. It's such a vicious cycle.  

For me, it's giving me a chance to get caught up on my own doctor appointments.  As well as getting the house in order. For now, we're taking it one day at a time.  He continues to see his Oncologist and ENT doctors every 6 months. Those appointments will be taken care of before the surgery; that will be such a relief.  

Lastly, I want to thank everyone who is still with us on Caringbridge, keeping up with the Journey. We thank each and every one of you for your prayers, thoughts and well wishes. The encouragements help him get through the day at times.  We're staying strong and god willing, we will persevere!

Journal entry by Linda DeLuca

The radiation finally took its toll on Paul's mouth this year. It began about 10 months ago when everything began to accelerate. His teeth were becoming more and more brittle. Pieces would fall out without warning. Our regular dentist would no longer treat him. It was time to have his teeth removed. He was warned that his deteriorating teeth could also cause heart disease if untreated much longer. Our dentist and ENT highly recommended Jaime Brahim, Oral and Maxillofacial Surgeon with the University of Maryland Medical Center in Baltimore City.  On April 18th he had all of his teeth removed in the hospital because of his higher risk of bleeding or other complications caused by the radiation. 

After the surgery we were told that it would not be uncommon for Paul to develop Osteonecrosis of the Jaw.  He was at a higher risk of developing it because leading up to the surgery in April he had dealt with two bouts of infection in his jaw already.  After the surgery the infection quickly came back. They've tried many different combination of antibiotics and antifungal medications.  He experienced severe side effects with every combination.  

Finally after three months of going back and forth, with nothing working, we were scheduled to see Janaki Kuruppu, MD - Infectious Disease.  We will also be seeing a colleague of Dr. Brahim. She is Donita Dyalram, MD - Oral and Maxillofacial Surgeon.  We had appointments with both on July 20th. A biopsy and culture of tissue in the infected area of Paul's jaw was taken during this appointment. We will be seeing Dr. Dyalram this Friday, August 3rd.  The results, we hope will give us an idea of which direction to go in next.  For now, hot compresses, salt rinses and Ibuprofen is all we can do. 

Stay tuned for results of our August 3rd appointment....

Journal entry by Linda DeLuca

The Journey will officially begin tomorrow, January 3rd at 2pm.  This is when Paul will be receiving his first Radiation treatment.  We will also receive "the schedule".  They tell us we should be able to have the treatment at the same time every day.  We hope to get early in the morning. 

I will try to make entries into the journal everyday.  If I miss a day, I promise to catch up on the next day!!  We love you all!!  Please keep Paul in your prayers. 

Comments Hide comments

Paul’s Story

Site created on December 30, 2010

Welcome to Paul DeLuca's CaringBridge website. Paul & I have created it to keep our family and friends updated about Paul's progress. Get started by reading the introduction to our website, My Story.

Visit often to read the latest journal entries on his progress, visit the photo gallery (we will try to post a few photos), and write us a note, story, one liner or whatever the mood stricks in our guestbook.  We want all of you to stay connected with us as we go through this.  You can share your stories with us as well. 

What started out as a sore throat that wouldn't go away has been diagnosed as BOT (base of tongue) Cancer.  This type of cancer is very difficult to diagnose and usually is not discovered until stage 3 or stage 4.  Paul's cancer is in stage 4 (a).  There are 3 substages to stage 4, a,b,c.  His is (a).  

He is scheduled to start an aggressive dose of Radiation on Monday, January 3, 2011.  Radiation will be given 5 days a week, (mon-fri) for 6-8 weeks.  He will also start Chemo on Tuesday, January 4, 2011.  The Chemo will be given once every 2 to 3 weeks, depending on how well the tumor reacts to the treatment. 

It has become very difficult for Paul to chew and swallow.  Most of the food is soft and/or puree'd.  He has had to have a feeding tube put in just in case the treatment makes it impossible for him the swallow.  It is there as a precaution.    We hope he never has to use it!!