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 and Owen
Wednesday, November 25, 2015
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.
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
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
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
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
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
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