Devin and Owen

Devin and Owen

Friday, December 18, 2015

12/18/15

Good Evening All,
I'm sorry it has been a while between updates but things (thank God) have been quiet around here. Devin continues to heal but it is a slow process. Last week was a lot of fun. Her wonderful co-workers at Good Shepherd Rehab threw her a surprise puppy party!!! What is a puppy party your ask? They told us to go to a certain house and when we got there there were 20 or so of her co-workers and 25 puppies!! They were between the ages of 5 and 7 weeks from 3 different litters. The house belonged to a wonderful woman named Ann who fosters the puppies for a shelter called Mostly Muttz. They were just adorable and anyone who knows Devin knows she just LOVES dogs!! As you can see she had a wonderful time!




Of course that was followed by "Max needs a sister" so Owen and Devin will become the proud parents of a puppy on December 30th. What a great way to see in 2016!.

Wednesday we went in to Upenn to meet with Erin the oncology nurse practitioner. She was pleased with Devin's progress although she said it will take time and Devin needs to be patient. She gave us some new prescriptions along with a referral for a physical therapist at Lehigh Valley that specializes in lymphedema. She will work on the pain, stiffness and swelling in Devin's jaw as well as the continuing pain and weakness in her shoulder caused by some damage to one of the nerves in her neck. We see the PT on January 4th and back to Erin on the 6th.

Thank you all for your encouragement, the many cards and gifts and for keeping her in your prayers. Knowing you are all rooting for her really helps. If you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site.

Wishing you all a Blessed Christmas and Happy New Year!! May 2016 be a better year!!

Hugs,
Rose

Wednesday, November 25, 2015

Update - 11/25/15

Good Evening to all,

Last week we went to Philly to meet with Erin the Oncology Nurse Practitioner. She was wonderful. She spent about an hour helping us understand what to expect over the next few weeks. Mostly it will be a healing time for Devin. The side effects will take 2 to 4 weeks to subside. As of today she is still not able to eat as the lesions are still there but they are beginning to heal. The nausea is beginning to ease as well. She is still exhausted so she naps frequently. I am happy to say that she does feel a little better each day. Our next appointment is not until December 16th. Until then we will be home praying for healing.

We are having a quiet Thanksgiving at home. We have so very much to be thankful for this year - the amazing doctors, nurses, and our amazing support system! You have all been such a part of this journey with your cards, phone calls, visits, gifts, words of encouragement, donations and most of all your prayers! Your have kept our spirits up!

Wishing you and yours a blessed Thanksgiving!

Hugs,
Rose


Tuesday, November 10, 2015

Devin Rings the Bell - 11/10/15

"Well it's all done, Thank God!! The past 6 weeks has been the most difficult of my life and I couldn't be more thankful for the people who were there to support me and help in anyway they could! Without those things, whether it was driving, making dinner, or sending a card or a gift, it didn't go unnoticed and treatment never would have gone as well as it did! Now it's time to rest and recover for the holidays and the next step in this crazy cancer journey! ‪#‎peaceoutcancer‬ ‪#‎devinstrong‬ 😎💜💪🏻  Devin"

Devin is a survivor and my hero! She has been "Devin Strong"!  Her friends at work made t-shirts that say Devin Strong and on the back "Whenever we begin to feel as if we can no longer go on HOPE whispers in our ear to "remind us" that WE ARE STRONG. Since she was little I always said that Devin is the strongest person I know and she continues to prove me right every day. She has been through so much and we look forward to her healing and growing strong again.

Now she will have 3 months to heal and prepare for the last surgery. It is just to finish repairing her mouth so it is a surgery that we look forward to. We have an appointment 11/19 and 12/16 to check on her healing. The first PET scan will also be in February.

Thank you to all the doctors, nurses, therapists and other medical professionals who have made this all as easy as possible. UPenn has been and will continue to be a blessing! Thank you to all who have visited, brought dinners, sent cards and most importantly prayed! We appreciate you all.  Keep those prayers coming!

Looking forward to the holidays!

Hugs,
Rose



Wednesday, November 4, 2015

update 11/4/15

Good evening all,
Thought I'd update you all after our visits to the doctors.

Monday was a very hard day for Devin. The radiation machine she uses was down so the day that started at 9:15 AM leaving Bethlehem didn't end until 4 PM when she finally got home. Thank you so much Kim, I know it was a long day for you too!  

Tuesday, we saw Dr. Lin.  He is still pleased with Devin's progress although each day is harder than the last. She lost some weight this week as the nausea got worse. He prescribed a anti-nausea medication so we will see if that helps. As of today she has 4 more radiation treatments to go. He says the side effects should peak about 3 days after the treatments end and then the healing can begin. We will be seeing his Nurse Practitioner a week after radiation ends and a few times after that to check on the healing and try to ease her off the pain meds.

Today we saw Dr. Canaday, the plastic surgeon. He was pleased with how she looks but said he will not be doing her second surgery for 3 months as she needs that time to heal. As you can imagine that was a huge disappointment to Devin and all of us as we thought it would happen sooner. It does make sense though since her mouth has many lesions and the surgery does involve another skin graft. He will see her again the first week of February.

She will have her first PET scan the second week of February and see Dr. Weinstein the 3rd week of February for the results. Then we assume surgery. She will be seeing Dr. Weinstein and Dr. Lin for PET scans every three months alternating between the two of them for the foreseeable future.

This is such a long road to travel but we look forward to this all being behind us and a time when Devin can get on with her life healthy and whole again.

 Thank you all for your encouragement, the many cards and gifts and for keeping her in your prayers. Knowing you are all rooting for her really helps. If you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site.




Tuesday, October 27, 2015

Update 10/27/15

Here we are at the beginning of week 5. 10 more radiation treatments to go! The pain meds Devin got from the doctor last week seem to have helped. They don't completely relieve the pain but they do make it bearable. The exhaustion continues and this week we have added some nausea to the mix. Today was doctor day and dr. Lin was very pleased with how Devin is tolerating the treatments. I can't imagine how she would feel if she was not tolerating them well.

Her spirits have improved with the help of the new meds and some gifts from her amazing co-workers at Good Shepherd. Thank you all!!

Tomorrow is Devin's 27th birthday! She is looking forward to putting 26 behind her and setting her sights on 27 being a much better year.

Thank you all for your encouragement and for keeping her in your prayers. If you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site.

Hugs,
Rose

Tuesday, October 20, 2015

Update 10/20/15

Today was the start of week 4 and the side effects are not getting any easier. Devin is exhausted all the time. She can no longer eat by mouth and is totally dependent on the feeding tube again. The doctor added a 4th pain med to try to control the pain in her mouth. The thrush has cleared up but has been replaced by lesions that Dr. Lin says will only get worse for the next 3 weeks. I pray that the pain meds work. Also her hair has begun to fall out :(  Dr. Lin says all this is normal and that since her cancer is a aggressive one they must treat it aggressively. He says she is handling it all very well although keeping her spirits up is becoming difficult. We are looking forward to November 10th when she can ring the bell in the office and be done with this stage of treatment.

Please keep her in your prayers and if you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me sit.

Hugs to all,
Rose

Wednesday, October 14, 2015

update 10/14/15

Good Morning all,

Well week 3 of radiation had started and the going is getting rough. Radiation is tough let me tell you! Devin is having a lot of pain and her tongue is very swollen so talking is hard and eating by mouth almost impossible. Thank God for the feeding tube!  She developed thrush so is on additional pain meds for that long with meds to get rid of it. Four new meds just in the last week. The exhaustion has set in so she sleeps a lot.  She is 1/3 of the way and the end is in sight. November 10th cannot come soon enough! Please keep those prayers coming!!

If you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site

Hugs,
Rose

Wednesday, October 7, 2015

Update 10/7/15

Good Morning All,

Well week one of radiation is behind us! Devin is feeling good so far. Side effects have been minimal at this point. The worst this week was the dry mouth and she is tired. I'm not sure how much of the tired feeling is the treatments and how much is the late nights.

Driving was a bit rough last week as all her appointments were at night. With the traffic caused by rush hour and the heavy rain we had last week, complicated by the hospital playing "catch-up" from the Pope's visit everything was running way behind schedule. And added complication was Devin's mask was to big as the swelling in her face and gone down more since it was made. So a new mask had to be made Thursday night. All of this combined for some very late nights. We were getting home about 9:30 so by the time you unwind it was late to bed for all. Thank you Carol for driving on a night run!

On the up side Dr. Lin did allow the treatments to proceed while the new mask was made and yesterday started week 2 so her appointments are all around noon time for the next 5 weeks which helps greatly with the traffic! It was nice driving in yesterday! All was running on time and since Tuesday is "Doctor Day" we saw Dr. Lin and met the nutritionist. The team is very pleased so far and the new mask is ready and they will start using it today which will speed things along. The down side of yesterday? We came out to get the car to discover that we had a flat tire! On the up side the valets were very helpful, AAA got to us in about 15 minutes and there was a tire store a few blocks away. Even better was that Siobhan came to Firestone and waited with us so we got to have a great visit while we waited!

Thank you again to all the drivers who have volunteered to help out with the driving. Your help is much appreciated. We have only 6 more days to fill and all her treatments will have drivers! If you are at all interested in or able to help with transportation to and from Philly, please PM, call or email  Devin or me :) !

 If you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site.  Enjoy your weekend and keep those prayers coming!

Thanks again for all the help and prayers.

Hugs,
Rose

Tuesday, September 29, 2015

9/29/15

Well today starts 6 weeks of radiation, 5 days a week until November 10th. Please continue to keep us in your thoughts and pray that the treatments can give me a solid chance at a wonderful, extremely long future with the people I love! If you are at all interested in or able to help with transportation to and from Philly, please PM me :) !

 If you would like to donate to help me with my medical expenses here is a link to her Go Fund Me site.  Enjoy your weekend and keep those prayers coming!

Thank you all,
Devin

Friday, September 18, 2015

Update 9/18/2015

Things are still going well. Tuesday we went to Upenn for Devin's radiology appointment. They did a CT scan and made the mask she will wear during the treatments. It conforms to her head/face and is marked to help guide the radiation. It also holds her head still. I am amazed how well she tolerated it as I know I couldn't have. The whole thing took about 45 minutes. Then we made her appointments for the 6 weeks and headed home. The first week of appointments as pretty ugly as they are all evening appointments but after that the next 5 weeks are late morning early afternoon. She will not start radiation until September 29 (after the Pope leaves Philadelphia) and will finish on November 10th.

Thursday Owen and Devin went in to see Dr. Canaday as she had started to develop a small infection again last week. He was very pleased that the antibiotics are doing their job and all looked good. He will see her again in November near the end of radiation to plan the next (hopefully last) surgery.

If you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site.  Enjoy your weekend and keep those prayers coming!

Hugs,
Rose

Wednesday, September 9, 2015

Update 9/9/15 - No More Trach!

Hi all,

Another good day at Upenn! First stop was with Lauren the speech therapist who was VERY happy with Devin's progress. She ok'd Devin trying more food with texture and will see her again in 2 weeks. Then it was on to Dr. Weinstein who couldn't have been happier about how she is healing and the progress she has already made with her speech. The best news was that he took the trach out! They say it should heal very quickly.

We stopped on the way home to celebrate with some yummy coffee drinks.

When we got home Dr. Lin's office called. She has an appointment at Upenn on Tuesday to get all the prep work done for the radiation to begin. She should get going in about a week and a half from Tuesday.

Hugs,
Rose

Sunday, September 6, 2015

Update 9/6/15

Good Morning All,

It's been a busy week with all good news so here goes!

Wednesday we went to see Dr. Canaday and he was very pleased with Devin's healing and her speech! She is talking like crazy. He said she is "setting the bar really high" and is "miles ahead" of where they expected her to be. He cleared her for radiation but said after radiation there will be another surgery to continue to repair the inside of her mouth. It seems he didn't have time or tissue to rebuild the floor of her mouth and that is why her tongue is tethered to her teeth. He will take another skin graft and rebuild the floor of her mouth and then untether her teeth. Devin is looking forward to having more freedom to move her tongue which will improve her speech and eating ability. She was also cleared to drink and eat pureed foods so is enjoying "tastes" again.

 Thursday was the trip to the oral surgeon and he to cleared her for radiation and gave her a prescription  for some tooth paste to help protect her teeth.

Friday she had visitors! Two of her professors from Misericordia came for a visit. She totally enjoyed the visit and hope they come back again!

Yesterday her college roommate Courtney came to visit from South Carolina! We always love to see Courtney! She's was here for the night and then moving on! We have so enjoyed having her here and hope to see her again soon. Uncle Spencer and Andrew also got in last night on their way home from their annual camping trip. Wonderful to see them and they loved seeing Devin up and around!

Well that's it for this week. Busy huh?!?!  We will be heading back to Philly on Wednesday to see Dr. Weinstein and the Speech Therapist. I assume that we will hear from the radiation oncologist next week as well to schedule the mapping. I think we probably will get going with radiation in the next 2-3 weeks and then on to the next surgery. It will be a very busy fall! At least the ride to Philly will be pretty as the trees change!

Thank you again for your prayers!  If you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site.

Hugs,
Rose

Tuesday, September 1, 2015

Update 9/1/15

Hi all,

 Devin has been making steady progress since returning home last week. She is healing and talking like crazy. We plugged her trach this weekend so we are really hoping they will remove it next week.  She has had enough of it.

Today was the first meeting with the radiation oncologist Dr. Lin. We really liked him. We met 2 other members of the team and look forward to meeting the rest of the team. They talked about all that needs to be done before we can get started. Most important is that Devin is healed enough. The radiation will be 5 days a week for 6 weeks and they will treat the mouth and the lymph nodes on both sides of her throat. It looks like it will be the end of September before we are ready to begin treatment.

Tomorrow we go back to Dr. Canaday to check on the infection and see where we stand. The wound care nurse who came today was very pleased so we are hoping for good news tomorrow.

Thursday we go to the oral surgeon as they want any dental work done before they begin radiation. After that appointment Devin will have a CAT scan of her chest just to be sure all is ok.

Thank you again for your prayers!  If you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site. 

Until next time,

Hugs,
Rose

Wednesday, August 26, 2015

Home Again


Good Afternoon All,

Well at least this trip to the hospital was really quick. I brought Devin home yesterday afternoon. She is healing from the infection and is home on antibiotics. Lehigh Valley is providing wound care as Andy and I learn how to take care of her neck. We return to see the doctor next Wednesday so speech therapy and starting to eat are on hold til at least then. It all depends on how quickly she heals, although judging by how she has done so far I don't think it will be long.

Devin is now feeling up to visitors! Please let us know when you will be dropping by so that we make sure she doesn't get to tired.

Thank you all again for the kind words, prayers, gifts, cards, contributions to her Go Fund Me site and all the various ways you all have supported us in this journey! All are greatly appreciated.

Until next time,
Hugs,
Rose

Sunday, August 23, 2015

12 steps forward one step back

Well after all the good news there was bound to be a bump in the road. Devin has been having a little drainage from her incision in her neck. The doctors had said it was normal but if it changed we should let them know. Well last night it changed and she could taste it in her mouth. This morning I called Upenn and the ENT doctors and they wanted to see her so we headed in Philadelphia to the ER. After a wait Dr. Weinstein's resident and fellow came down to the ER and immediately knew exactly what was going on. They rinsed out the small hole in the neck and packed it, started her on antibiotics and admitted her back to the same floor of the hospital for a couple of days. They say this is a common complication and will resolve in a day or two.

She is not to happy to be back in the hospital (although the nurses were happy to see her), but we will make the best of it and look forward to her return home soon.

Keep those prayers coming. As Siobhan said "After some amazing news last week the reality of how grueling recovery is and how long of a fight we have has really set in." Your prayers and kindness truly helps keep us going. Thank you.

Hugs,
Rose

Thursday, August 20, 2015

Our Post-op trip to Upenn

Good Morning All,

Yesterday was the big day, Devin's first post-op trip to Philadelphia! She has been doing so well we were very hopeful of good news.

After an hour and 40 minute trip to the city we had our first appointment at 8:15 with Dr. Canaday the plastic surgeon who did the reconstruction. He was thrilled with Devin's progress. Her tongue and arm are both doing great and he wants her back in a month. He said he expects a great recovery especially since she is already talking and early talkers always do good as long as they do the speech therapy which we all know Devin will do great at. He is already planning a future surgery to make her tongue more mobile and as "perfect" as it can be.

We then moved on to Upenn a few miles away to Dr. Weinstein's office. They said if we came over they would try to move our late afternoon appointments up. We stopped at the Upenn pharmacy to get Devin pain meds and it was quite a relief to have them and be able to give her some right away.
 We waited for a while at Dr. Weinstein's office but it was well worth the wait. He said the pathology report was great and he couldn't be happier. The margins were good with no sign of disease and the 2 lymph nodes they were worried about show no cancer so there is no lymph involvement!!! This also means that although she will still need radiation, chemo is now off the table. After Dr. Weinsten left the room we saw Lauren the speech therapist. She did a swallow test with applesauce, apple juice both thickened and regular which Devin passed with flying colors. She gave her exercises to do and said she can start trying various smooth foods like pudding, yogurt with no fruit, applesauce, pureed foods and smoothies over the next 3 weeks. We were thrilled to say the least.

The only down side was that she still has quite a bit of swelling so the trach has to stay put for 3 more weeks until we go in for the next appointment. She was upset and when they changed it to a smaller trach she really had quite a hard time with coughing and mucus so it was a very long trip home and a rough night. I am happy to say that she is doing better this afternoon so hopefully we can put this bump in the road behind us and celebrate the good news.

We will return to Upenn in 3 weeks to see both doctors and the speech therapist. They are also making appointments around the same time for meetings with the radiation department and a dentist down there who has to see her before radiation therapy can begin. The first PET scan will be in February.

As we move forward with the next part of this journey please keep Devin in your prayers!

Hugs,
Rose

Monday, August 17, 2015

Update 8/17/15

Good Morning All,

Things are still progressing well. Devin was running a low fever Saturday night but our family doctor came over and made sure all was well and put our minds at ease. Other than that Devin is doing well and we are looking forward to our trip to Upenn this week to see if the doctors are as pleased as we are.

We did have a trip to the ER on Saturday with Andy. He has been diagnosed with sudden onset diabetes so we are in the process of getting him straightened out. When it rains it pours!

I must take a minute to thank Devin's great co-workers at Good Shepard Rehab and the wonderful team she goes to Haiti with for all their help and good wishes, they are much appreciated. Also all who are making meals for us by way of the meal train. That helps a lot.

I'll post again after our trip to Philadelphia on Wednesday! Until then thank you all for the prayers and keep them coming!

Hugs,
Rose

Thursday, August 13, 2015

Devin Doing Well

Hi Everyone!

Just a quick report Devin continues to amaze us. She is beginning to breathe through her mouth and swallow some! We can feel the end of the trach in sight! Yesterday the doctor cleared her for some ice chips by mouth and said it sounds like everything is working the way it should. Although her muscles are sore from coughing she is clearing the trach most of the time on her own. She is showering and walking around but those activities tire her out so sleep is still very much a priority. Especially as her sleep is still disrupted often at night. It is so good to see daily improvement. Her arm is beginning to show signs of healing. and all swelling is slowly going down.

Thank you all for all the support and well wishes. Thank you to everyone who participated in the mealtrain that was set up by my co-workers at St. Theresa School. It is a huge help and we will add dates as they are needed.

Hugs,
Rose

Tuesday, August 11, 2015

Home at Last

Well it's been a long week, but I'm finally home, showered and resting in my own bed. There is no better feeling in the world.

During the last few days at the hospital, I did my best to stay awake, walk some each day and move as much as possible. Not as easy as it sounds with what feels like 20 pounds of tubing and swelling all above the waist. However pain put a big hiccup in things for a bit as it wasn't controlled nearly well enough.  Mom put on her "mama bear" voice on and got me all fixed up. Shev, Owen and my parents did an amazing job learning the things I know but can't help myself with as well as making sure I was never alone and well cared for. I am so lucky to have this core team of support to help me move through all of this. 
 
After a messy discharge we headed home and settled in with mom and dad dealing with supply deliveries, visits from the nurse and respiratory therapist, and not to mention me all night.

We made it through the first night of bell ringing and pain meds and all that all little tired but it was definitely my best night yet since surgery. A nurse came to check on things and seems pleased with how much the hospital taught us before I came home. Now the real healing begins. My tongue is still swollen but I can finally start to close my mouth more fully which is helping with comfort, also my neck incision looks great. The right side of my face and neck and still quite swollen which I'm not fan of but this too shall pass. The area on my left arm where they took tissue to make my new half tongue will be a long road to healing, and maybe end with a new tattoo :). The doctors were very pleased with everything so far for a positive outcome so let's hope that continues!

For now it's time to rest, wrap our brains around the gravity of what has happened, and recover, then back to Upenn next week to hopefully start the next phase of this journey. I know many of you have said you're eager to visit and help, when I'm ready for visitors I'll post, maybe by the weekend or so. If you have ideas for how to support mom and dad with meals or anything that can help throw it out there!

Thank you all for your prayers so far and those ongoing for a speedy recovery. Keep them coming! 
Devin

Friday, August 7, 2015

Update

Well things are going really well. Devin is up and walking some and and getting used to the trach. Siobhan called and said she is much more alert and she is getting the anxiety under control. The doctors say that all parts of the surgery are healing well and she will be coming home on Monday.

Siobhan has been a God send and I don't know what I would have done with out her and Owen's help. One or the other has been there every minute. They are so very good with her. Their updates make it a little easier to be home getting things ready instead of with her. Miss her and will see her tomorrow!

All prayers and encouragement is welcome it helps so much.

Well I have to get back to getting the dog hair out of the house and getting her room ready. Wish us luck on the next part of the Journey.

Wednesday, August 5, 2015

Surgery update

Update update update
Yesterday Devin had surgery with her oncologist Dr. Weinstein and a plastic surgeon to rebuild her mouth where the tumor was. Dr. Weinstein is an amazing surgeon and a head of neck and throat care treatment at UPenn, aka best of the best. Surgery was set to begin at 10:45 but we ended up hanging out in or-op for a while and she finally went into surgery at 1pm.
The surgery went in three steps with three separate surgeons.
First a feeding tube was placed, went perfectly.
Second Dr. Weistein and his team used the robotics to remove the tumor. After 8 long hours and Siobhan and Owen giving the nurse giving us news every dirty look in the book, Dr. Weinstein came to tell us that his part of the surgery had gone VERY well! He was able to remove the entire tumor, with great margins and repeatedly told us he was "very pleased." He did mention that radiation, chemo, and therapy but her odds are looking pretty good :)
We waited an additional hour or so and Dr. Canaday came to speak with us. He is the plastic surgeon, again one of the best for reconstructing the mouth and throat. He to was very pleased with how everything went. He reconstructed her tongue and tonsil,  and repaired her throat. Dr. Weinstein saved most of the muscles required for swollowing so that is great news.

After a few hours in recovery Devin finally got to her room about 1:30 AM. We visited for a bit and went to get some rest.

Today was a good day. She is struggling a bit with her trach but has been sitting up all day and her tongue is moving!

Please continue to keep us all in your prayers.

Saturday, August 1, 2015

The Plan

The biopsy showed a large tumor that also extends from the tonsil to part of the tongue and palette. After appointments with both Dr. Weintsein and the plastic surgeon Devin heads to surgery on Tuesday. First he will remove all of the tumor then the plastic surgeon will reconstruct her cheek, tongue, tonsil and palette (basically anything in her mouth that they had to remove. She will have a feeding tube and tracheotomy (both of those will be temporary). The plastic surgeon does more of these reconstructions than anyone else in the country. We are truly blessed to have such an amazing team working for our Devin.

She will be in the hospital for 7 to 10 days then home. The surgery will be followed by 5 weeks of radiation 5 days a week and Speech Therapy. All of this will be done a UPenn Hospital in Philadelphia.

Needless to say there is a rough road ahead but we are one tough family and we will get through this and on to a bright future for Devin.

All prayers and encouragement are welcome!


The Journey Begins

I can't believe I am even writing this but  Devin has been doctoring for a sore throat for the last couple of months. The end of May they sent it out for a biopsy and after 2 labs and many tests she was diagnosed  with a form of tonsil cancer called tonsilar neoplasm.  It is found in 60 year old smokers 97% of the time. Since she is a non smoker and only 26 they are sending us to an expert at the U Penn. We had an appointment on Thursday 7/23 to see where we head from here.


The appointment was with Dr. Weinstein (the specialist).  He is the head of the department at University of PA hospital in Philadelphia. He is one of the best in the country.

He talked to us for awhile and at least he used the work "curable" instead of "treatable" which made us feel better. Today they did blood work, a chest x-ray and a CT scan. Next Tuesday we go back for and endoscopy/biopsy. Thursday we go back again for final diagnosis and to discuss the treatment plan. He said it will probably involve surgery, chemo and radiation. Next Thursday we will find out if she is a surgical candidate. He says it is a balancing act between removing the tumor and all the cancer and leaving enough of her tongue so that she can swallow and and not have speech issues. At 26 it is a quality of life issue. All so very scary but we both felt very confident in him. He told me he has 2 children of his own so he totally gets it and will give her 200%.

She is in a lot of pain. They gave her liquid oxicodone so that she can sleep. She is planning to work as long as she can.