Well the ups and downs of a cancer diagnosis continue. Last week we had an appointment with Dr. Weinstein to get Devin's PET Scan results. It was not a good news day. There are some areas of the PET Scan that lit up where some of the scar tissue is and since he doesn't have any other post surgery Scan to compare it to Devin will have a MRI tomorrow and an ultra sound on Tuesday to see if it is scar tissue and not disease. He's pretty positive it's nothing but since it was a large tumor and an extremely aggressive cancer we and he don't want to take any chances. He also cancelled surgery. He would like her to wait 3 months until he can do another PET Scan to compare before Dr. Canaday starts moving things around in her mouth.
While she waits patiently (well maybe not so patiently) Devin will be concentrating on her physical therapy. He will be working on strengthening her shoulder and regaining her stamina. Also she is working toward finally getting rid of her feeding tube which has proved to be a challenge as one of the criteria is maintaining her weight which has been an issue .
Please continue to keep her and us in your prayers as we continue on this long journey of ups and downs.
Thank you all for your encouragement, and for
keeping her in your
prayers. Knowing you are all rooting for her really helps. She has to go
on COBRA for her benefits so that cost and continuing medical bills put a
strain on the budget so if you would like to donate to help Devin
with her medical
expenses here is a link to her Go Fund Me site. Thank you so much to those who have already donated.
Hugs,
Rose
Devin and Owen
Thursday, February 25, 2016
Monday, February 8, 2016
Update 2/8/16 - On the Road to Recovery!
Good Evening All,
We had two appointments this week and things went amazingly well! First on Wednesday we went to see Erin the Oncology Nurse Practitioner. She said that Devin's lesions have healed and the thrush is finally gone! We couldn't be happier for Devin. This clears the way for her to slowly get off most of her pain meds and prepare for her next surgery. She is finally beginning to eat small amounts again too!
Friday we saw Dr. Cannady the plastic surgeon. He too agreed that she is ready for surgery! The big surprise came when he said it can be done as an outpatient procedure. No trach, no days in the hospital and no new skin graft. The graft for her mouth has been in her new tongue all along. He will make a horizontal incision across her tongue and with some "fancy stitching" he will release her tongue which has been tethered to the gum line, and he will make a floor to the right side of her mouth. At the same time he will fix the scar on her neck where she had the infection which has really been painful and limiting the range of motion in her neck. As you all can imagine we almost danced out of his office. The surgery will be on February 23rd as long as her PET scan is clear. The scan is this Wednesday, 2/10 and follow up with Dr. Weinstein (the boss) is the following Wednesday 2/17. Please send lots of prayers that all is good.
After surgery she will have speech therapy and continue with PT. PT so far is going well but there is still much to be done to get her shoulder strong and improve the range of motion in her neck. The nerve injury is really throwing of the balance that "normal" muscles keep which isn't helping. She is also having a great deal of jaw pain and stiffness from all of the scar tissue from both surgery and radiation. Her PT said that her jaw is currently asymmetrical which will only lead to more pain down the road. She has a plan to address it, however this is on hold until after surgery to prevent from any further infection, thrush or tissue tearing from occurring which would just push surgery back further. As you can bet we don't want that to happen!
Thank you all for your encouragement, and for keeping her in your prayers. Knowing you are all rooting for her really helps. She has to go on COBRA for her benefits so that and continuing medical bills put a strain on the budget so if you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site. Thank you so much to those who have already donated.
xoxo Rose
We had two appointments this week and things went amazingly well! First on Wednesday we went to see Erin the Oncology Nurse Practitioner. She said that Devin's lesions have healed and the thrush is finally gone! We couldn't be happier for Devin. This clears the way for her to slowly get off most of her pain meds and prepare for her next surgery. She is finally beginning to eat small amounts again too!
Friday we saw Dr. Cannady the plastic surgeon. He too agreed that she is ready for surgery! The big surprise came when he said it can be done as an outpatient procedure. No trach, no days in the hospital and no new skin graft. The graft for her mouth has been in her new tongue all along. He will make a horizontal incision across her tongue and with some "fancy stitching" he will release her tongue which has been tethered to the gum line, and he will make a floor to the right side of her mouth. At the same time he will fix the scar on her neck where she had the infection which has really been painful and limiting the range of motion in her neck. As you all can imagine we almost danced out of his office. The surgery will be on February 23rd as long as her PET scan is clear. The scan is this Wednesday, 2/10 and follow up with Dr. Weinstein (the boss) is the following Wednesday 2/17. Please send lots of prayers that all is good.
After surgery she will have speech therapy and continue with PT. PT so far is going well but there is still much to be done to get her shoulder strong and improve the range of motion in her neck. The nerve injury is really throwing of the balance that "normal" muscles keep which isn't helping. She is also having a great deal of jaw pain and stiffness from all of the scar tissue from both surgery and radiation. Her PT said that her jaw is currently asymmetrical which will only lead to more pain down the road. She has a plan to address it, however this is on hold until after surgery to prevent from any further infection, thrush or tissue tearing from occurring which would just push surgery back further. As you can bet we don't want that to happen!
Thank you all for your encouragement, and for keeping her in your prayers. Knowing you are all rooting for her really helps. She has to go on COBRA for her benefits so that and continuing medical bills put a strain on the budget so if you would like to donate to help Devin with her medical expenses here is a link to her Go Fund Me site. Thank you so much to those who have already donated.
xoxo Rose
Thursday, January 14, 2016
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
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
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
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
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
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.
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.
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