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

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

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

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

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

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

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.

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.

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.