Hi All,
I know it's been awhile since my last post. Things were going along just fine, although Devin continued to have heartburn and vomiting every 4 weeks or so since radiation. The weekend of March 13th was particularly bad and the oncologist on call at Upenn said it was an after effect of the radiation and gave her a new prescription which worked right away.
On Monday March 21st Devin called me at work about 3PM in a great deal of pain. She actually said it was a 10 which is not a number she has used through this entire journey. I rushed home and called Erin at Upenn while I was on my way. She said that I should take her to our local emergency room and have her heart checked and that they had a cocktail that can stop the heartburn. By evening they had ruled out heart and the cocktail wasn't working so they started ruling out other things. The first and only thing they needed was an ultrasound of her gallbladder. She had stones, sludge and was starting to run a fever. After consultation with Upenn it was decided to admit her to Lehigh Valley Muhlenburg and have an ENT and anesthesiologist both check her out the next day to see if they were comfortable doing the surgery. Otherwise it would have been off to Upenn. They both signed off on it the next day so she was off to surgery about 4PM. All went well although the anesthesiologist said that Devin is hard to intubate and she now has a card she must carry telling them the type of scope that should be used. She came home and has been recovering. She is eating and taking her meds by mouth so that she can hopefully get her feeding tube removed in the not to distant future. Next thing is a return to PT to get her stamina and movement in her shoulder back, a PET scan in May and hopefully surgery in early June.
Just a reminder: that the Catasauqua Area Showcase Theater
is doing a fundraiser through their Families Helping Families Program.
It works like this: Two families are chosen to be recipients (We are
one of the 2). In the lobby before entering the auditorium there is a
table and jar set up. The audience is asked to donate any amount they
would like to the cause. The amount is counted and whatever is brought
in, Catasauqua Area Showcase Theater will match that amount. Monies
collected at all the performances count towards the total that is
matched. Both families then split the donations.
This year the play they are doing is Mary Poppins. If you are interested
in supporting this great organization that is supporting Devin you can
order tickets to the show here.
Performances will be held April 22, 23, 29, & 30 at 7pm and April 24 & May 1 at 2pm. Tickets for Adults are $10, Seniors (62+) $8, and Student (Grade 12 and under) $6.
We will be attending the April 23rd performance. Hope to see some of you there!
Devin and Owen
Tuesday, April 12, 2016
Friday, March 11, 2016
Families Helping Families
Hi All,
I just wanted to let you know that the Catasauqua Area Showcase Theater is doing a fundraiser through their Families Helping Families Program. It works like this: Two families are chosen to be recipients (We are one of the 2). In the lobby before entering the auditorium there is a table and jar set up. The audience is asked to donate any amout they would like to the cause. The amount is counted and whatever is brought in Catasauqua Area Showcase Theater will match that amount. Monies collected at all the performances count towards the total that is matched. Both families then split the donations.
This year the play they are doing is Mary Poppins. If you are interested in supporting this great organization that is supporting Devin you can order tickets to the show here.
Performances will be held April 22, 23, 29, & 30 at 7pm and April 24 & May 1 at 2pm. Tickets for Adults are $10, Seniors (62+) $8, and Student (Grade 12 and under) $6.
We will be attending the April 23rd performance. Hope to see some of you there!
Have a great weekend and enjoy the beautiful weather.
Hugs,
Rose
I just wanted to let you know that the Catasauqua Area Showcase Theater is doing a fundraiser through their Families Helping Families Program. It works like this: Two families are chosen to be recipients (We are one of the 2). In the lobby before entering the auditorium there is a table and jar set up. The audience is asked to donate any amout they would like to the cause. The amount is counted and whatever is brought in Catasauqua Area Showcase Theater will match that amount. Monies collected at all the performances count towards the total that is matched. Both families then split the donations.
This year the play they are doing is Mary Poppins. If you are interested in supporting this great organization that is supporting Devin you can order tickets to the show here.
Performances will be held April 22, 23, 29, & 30 at 7pm and April 24 & May 1 at 2pm. Tickets for Adults are $10, Seniors (62+) $8, and Student (Grade 12 and under) $6.
We will be attending the April 23rd performance. Hope to see some of you there!
Have a great weekend and enjoy the beautiful weather.
Hugs,
Rose
Monday, March 7, 2016
Great test results! 3/7/16
Hi All!
Well the last 10 days were alittle rough. Devin's PET Scan came back with 2 areas of concern. One was the area around her tougue and the other was 2 enlarged lymph nodes on the left side which was cancer free at the time of surgery.
Friday Feb. 26th Devin and I went to Upenn for her to have an MRI and we went again on Tuesday, March 1st for an ultra sound of the lymph nodes and a needle biopsy. They took 3 samples of the lymph nodes. It has been hard waiting but today we got the word that all tests came back negative for cancer!!! To say we are happy is an understatement. Now Devin heads back to PT to get her shoulder stonger and her stamina back. Her next PET Scan in is May.
Thank you for all your prayers and donations they help a lot. If you would like to donate please click here for a link to her Go Fund Me site. Also a theater group in Catasaqua is going to help Devin through their Families helping Families Program. If you like musicals watch for the next blog installment. We will be heading to see "Mary Poppins" at the end of April. I'll post ticket information as soon as I get it!
Hugs,
Rose
Well the last 10 days were alittle rough. Devin's PET Scan came back with 2 areas of concern. One was the area around her tougue and the other was 2 enlarged lymph nodes on the left side which was cancer free at the time of surgery.
Friday Feb. 26th Devin and I went to Upenn for her to have an MRI and we went again on Tuesday, March 1st for an ultra sound of the lymph nodes and a needle biopsy. They took 3 samples of the lymph nodes. It has been hard waiting but today we got the word that all tests came back negative for cancer!!! To say we are happy is an understatement. Now Devin heads back to PT to get her shoulder stonger and her stamina back. Her next PET Scan in is May.
Thank you for all your prayers and donations they help a lot. If you would like to donate please click here for a link to her Go Fund Me site. Also a theater group in Catasaqua is going to help Devin through their Families helping Families Program. If you like musicals watch for the next blog installment. We will be heading to see "Mary Poppins" at the end of April. I'll post ticket information as soon as I get it!
Hugs,
Rose
Thursday, February 25, 2016
2/25/16 - update
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
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
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
Subscribe to:
Posts (Atom)