1/14/16

Well happy 2016 to you all!! We have kicked 2015 to the curb and are looking forward to a much better 2016!!

I'm sorry I really should update the blog but time just gets away from me. We ended up having 2 appointments last week. On Tuesday we saw the physical therapist. They are working on her lymphedema already. It looks like there is some nerve damage to her face, her ability to make expressions is compromised although not really noticeable and they need to work on range of motion and strengthening her neck. There is nerve damage to her shoulder.  She will need to learn to protect her "wing" and new ways to lift and reach. Strengthening and range of motion will be worked on there as well.  Linda her PT is amazing, we are blessed to have met her and have her directing Devin's physical therapy. She will go for PT every Tuesday and Thursday for the foreseeable future with the goal of returning to work. Right now we have appointments for the next 8 weeks.

We saw Erin the oncology nurse practitioner on Wednesday. Devin's speech improved some this week although she still can't eat any better and continues on the pureed food and the feeding tube. She lost some more weight as she had a stomach bug over the holidays and that now has slowed her healing as she has lost 20% of her total body weight since this whole ordeal began. She has thrush again :( which is also slowing the healing process. Erin is not unhappy with Devin's progress although she thought it would be quicker. We still have not been able to get her off any meds although some of the dosages are a bit lower. Erin said that we are in uncharted territory. That Devin is the youngest and had one of the most invasive surgeries she had ever seen. We compounded the problem by then hitting her with very high doses of radiation before she was fully healed. Heaven only knows what the next surgery will bring. She says this is a marathon and not sprint although we get tired of hearing that. Dr. Lin the radiation oncologist sent a letter to Dr. Weinstein thanking him for the privilege of working with Devin and that he was going for a cure and feels she will do well. So that's about where we are at the moment. Pray the weather holds so we can make all our February appointments!

Devin and Owen did adopt a puppy from the puppy party. Ellie came to live with us on 12/30. She is a cutie, as you can see, and quite a  handful! She is keeping us all on our toes and has made Devin's days much more eventful!

 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. Medical bills are beginning to mount so 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 wonderful 2016!

Hugs,
Rose

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

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

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

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.

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

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