Good Afternoon All! Hope you are all doing as well...I love spring....:)
Ally had the first follow-up appointment yesterday with the oncologist who got her into the clinical trial that has proven to be so effective at fighting her cancer. As I said in my most recent post, we knew going in that we were likely headed for 18 more cycles of chemo (what she's done for 6 cycles already before surgery). However, we kind of held on to a glimmer of hope that since all the breast tissue was taken out and the lymph nodes test clean that it would result in her not having to follow-thru with 18 more cycles....NO SUCH LUCK...
Essentially the story is this: While Allyson appears to have beaten breast cancer, the HER-2 protein that she has in her body did not get taken out during surgery. This characteristic is part of her DNA, which means that just as the HER-2 protein fueled the growth of her breast cancer, it will also fuel the growth of any other cancers that rear their ugly heads down the road. So...we would be rather foolish to leave the trial now and decide not to take the remaining treatments (even though that is an option). Why not let the drugs do their work and continue to kill anything else evil that is roaming around inside that body?
It is a hard pill to swallow for sure, but at least now she gets to go through the cycles knowing the effectiveness of the treatment she is receiving. Overall she is in great spirits. She hopes to have the drainage tubes taken out at her appointment with the reconstruction doc on Friday...and the fluid is certainly decreasing in volume that is coming out of those tubes. She really just wants to return to normal and not worry about catching them on anything or the kids grabbing them, or the dog jumping up and catching them, etc.
Next step is Tuesday of next week when she starts with cycle #1 of the 18 remaining. She doesn't want to waste any time and just wants to "get it over with"....so please continue to keep her in your thoughts as she continues down a blessedly downhill road now that surgery is over.
Love you!
Kyle
Wednesday, May 6, 2015
Thursday, April 30, 2015
Amazing news update!
Well, the surgical oncologist called last night, but we missed the call and he didn't leave a message, and then his office was closed when we called back....argh! We knew he had an update with pathology reports so we called first thing but he wasn't in yet. Around 9:30 he called back to report that the cancer in the breast tissue taken during surgery showed no signs of life! The cancer retreated into remission before it was even taken out....so LIFE IS GOOD! Woohoo!
We go in this afternoon to see the reconstruction doctors for a post-surgery follow-up exam, and then we see the surgical oncologist tomorrow to review the full results that he called with today.
The next steps: We see the chemo oncologist on Tuesday morning to review the pathology reports with him, and then he lays out the next steps in treatment for Allyson. Up until this point we knew if the results from the surgery were this good that she would have 18 cycles of treatment left using the clinical trial drugs.
However, we also know that the clinical trial drugs are hard on a person's heart, so we are worried about long term use of those drugs. We don't want to get our hopes up that the treatment plan will change as a result of such positive pathology reports, but it is hard not to... Maybe she won't have to go through this for as long as originally described?
This weekend will be gorgeous in Charlotte...sunny and in the high 70s...and Megs/Trip come to town tonight to spend the weekend and now celebrate with us! A bottle of bubbly is in order! We've got lots going on, so please pray for me as I try to tie down Allyson so she doesn't get carried away and still thinks about taking care of herself. She continues to do remarkably well and is recovering nicely. She's up and about most of the day now and the drainage tubes are filling with less and less fluid, so everything seems to be going well at this point with recovery.
We've got more meals/dinners lined up for the next few weeks that I will have a hard time not gaining a lot of weight, but you can't let it go to waste! Thank you so much for all the people that have been helping out with meals, or even just praying and sending positive energy our way. We are truly blessed in so many ways that I can't do it justice in writing.
Have a great weekend!
Love you, Kyle
We go in this afternoon to see the reconstruction doctors for a post-surgery follow-up exam, and then we see the surgical oncologist tomorrow to review the full results that he called with today.
The next steps: We see the chemo oncologist on Tuesday morning to review the pathology reports with him, and then he lays out the next steps in treatment for Allyson. Up until this point we knew if the results from the surgery were this good that she would have 18 cycles of treatment left using the clinical trial drugs.
However, we also know that the clinical trial drugs are hard on a person's heart, so we are worried about long term use of those drugs. We don't want to get our hopes up that the treatment plan will change as a result of such positive pathology reports, but it is hard not to... Maybe she won't have to go through this for as long as originally described?
This weekend will be gorgeous in Charlotte...sunny and in the high 70s...and Megs/Trip come to town tonight to spend the weekend and now celebrate with us! A bottle of bubbly is in order! We've got lots going on, so please pray for me as I try to tie down Allyson so she doesn't get carried away and still thinks about taking care of herself. She continues to do remarkably well and is recovering nicely. She's up and about most of the day now and the drainage tubes are filling with less and less fluid, so everything seems to be going well at this point with recovery.
We've got more meals/dinners lined up for the next few weeks that I will have a hard time not gaining a lot of weight, but you can't let it go to waste! Thank you so much for all the people that have been helping out with meals, or even just praying and sending positive energy our way. We are truly blessed in so many ways that I can't do it justice in writing.
Have a great weekend!
Love you, Kyle
Sunday, April 26, 2015
48 hours post surgery
At home! They allowed her to leave the hospital yesterday afternoon around 3:30PM. There were no outward signs of trouble with the fluid being drained from the breasts, and she was fully ambulatory when she wanted to be. I expected the ride home to be like after a C-section, with every pothole and crack in the road causing her discomfort, but she actually had little issue with the drive!
Once we pulled in and got to see the kids for a bit she went upstairs and stayed in bed for the majority of the night. We did, however, get to have a nice family dinner in the dining room as Erin and Linda made some awesome beef stroganoff. We all got to go in and hang out with her in our nice, big comfy bed...so it was very nice to be in our own home.
Last night went ok...especially because my Blackhawks closed out the series with the Predators...I kid, I kid... not really ;P Ally reported that she was up here and there throughout the night, but for the most part slept ok aside from having to be propped up at all times (to help with drainage). She has two ports coming out of the side of her body (one on each side) that drains blood and other fluids through a perforated tube that loops down and around the bottom of each breast. These lines are connected to a bulb at the end of each one that creates suction so that the drainage occurs properly. It is rather fascinating to me...and surprisingly, to the kids too! They love to watch the process of stripping the lines of all the fluid and then emptying the bulbs and measuring how much fluid was there in order to make sure nothing is amiss.
Today she has been up and around pretty regularly...and got her first real shower in too..so that was a great feeling for her! She is still in a lot of pain, but I'm surprised at how well she is getting around and dealing with the basics. You would never know that she was on the operating table less than 48 hours ago.
Status of the tah-tahs: She had 200 ml of fluid put in each spacer (a temporary implant that they will fill up with fluid every couple of weeks until she reaches the size she wants to be in the end...then outpatient surgery to put the real implant in) while she was on the operating table...so we were all surprised by that. We just expected them to put the spacers in and put minimal fluid in (if any), but she came out of surgery with a bigger chest than she went in with! Crazy! I know, I know...TMI.
Anyway, I hope you are all having a Sunday Funday! I got a ride in today, and even though it was chilly and overcast, it was still the fresh air and exercise that I needed after sitting around for two days.
Love you all and talk to you soon!
Kyle
Once we pulled in and got to see the kids for a bit she went upstairs and stayed in bed for the majority of the night. We did, however, get to have a nice family dinner in the dining room as Erin and Linda made some awesome beef stroganoff. We all got to go in and hang out with her in our nice, big comfy bed...so it was very nice to be in our own home.
Last night went ok...especially because my Blackhawks closed out the series with the Predators...I kid, I kid... not really ;P Ally reported that she was up here and there throughout the night, but for the most part slept ok aside from having to be propped up at all times (to help with drainage). She has two ports coming out of the side of her body (one on each side) that drains blood and other fluids through a perforated tube that loops down and around the bottom of each breast. These lines are connected to a bulb at the end of each one that creates suction so that the drainage occurs properly. It is rather fascinating to me...and surprisingly, to the kids too! They love to watch the process of stripping the lines of all the fluid and then emptying the bulbs and measuring how much fluid was there in order to make sure nothing is amiss.
Today she has been up and around pretty regularly...and got her first real shower in too..so that was a great feeling for her! She is still in a lot of pain, but I'm surprised at how well she is getting around and dealing with the basics. You would never know that she was on the operating table less than 48 hours ago.
Status of the tah-tahs: She had 200 ml of fluid put in each spacer (a temporary implant that they will fill up with fluid every couple of weeks until she reaches the size she wants to be in the end...then outpatient surgery to put the real implant in) while she was on the operating table...so we were all surprised by that. We just expected them to put the spacers in and put minimal fluid in (if any), but she came out of surgery with a bigger chest than she went in with! Crazy! I know, I know...TMI.
Anyway, I hope you are all having a Sunday Funday! I got a ride in today, and even though it was chilly and overcast, it was still the fresh air and exercise that I needed after sitting around for two days.
Love you all and talk to you soon!
Kyle
Saturday, April 25, 2015
A long, but uneventful first night
Good Morning!
So last night went pretty well actually...after Ally got some food in her stomach she started to get sleepy again and basically went in and out of a narcotic-hazed consciousness for most of the evening. A little after 9 and she was basically just cashed out for the night. Sleeping in her room for the night was actually very similar to the first couple nights in the hospital with a newborn. IV pumps clicking, leg pressure sleeves whirring and releasing air over and over, people coming in every couple of hours to re-administer pain meds and antibiotics. She needed help to go to the bathroom a number of times, but is walking better already. The main difference was that there was no newborn in the room that needed mom's milk or making newborn noises so in between nurse visits we both actually slept a little.
They moved her over to oral pain meds in hope that she can go home sometime after lunch today. She is definitely in pain at this point, and she's got some congestion in her throat from the tube they had down her throat to help her breath during surgery....but every time she coughs it hurts even worse. The drain tubes from the plastic surgery seem to be operating well too, so we are hopeful that both doctors sign off on allowing her to leave after they visit this morning for their post-op visits. The hospital bed she's in is too short for her with the way they have her sitting up, so it will be nice for her to get into her nice big bed at home and have some peace away from the constant motion outside her hospital room door.
I'll be taking a couple of videos this morning for Molly Grantham's blog at WBTV, and I will also post them here when they are ready. Thanks for all the notes yesterday, as they kept me busy in the waiting room for the 8 hours that I was sitting there yesterday. Talk to you soon!
Love you,
Kyle
So last night went pretty well actually...after Ally got some food in her stomach she started to get sleepy again and basically went in and out of a narcotic-hazed consciousness for most of the evening. A little after 9 and she was basically just cashed out for the night. Sleeping in her room for the night was actually very similar to the first couple nights in the hospital with a newborn. IV pumps clicking, leg pressure sleeves whirring and releasing air over and over, people coming in every couple of hours to re-administer pain meds and antibiotics. She needed help to go to the bathroom a number of times, but is walking better already. The main difference was that there was no newborn in the room that needed mom's milk or making newborn noises so in between nurse visits we both actually slept a little.
They moved her over to oral pain meds in hope that she can go home sometime after lunch today. She is definitely in pain at this point, and she's got some congestion in her throat from the tube they had down her throat to help her breath during surgery....but every time she coughs it hurts even worse. The drain tubes from the plastic surgery seem to be operating well too, so we are hopeful that both doctors sign off on allowing her to leave after they visit this morning for their post-op visits. The hospital bed she's in is too short for her with the way they have her sitting up, so it will be nice for her to get into her nice big bed at home and have some peace away from the constant motion outside her hospital room door.
I'll be taking a couple of videos this morning for Molly Grantham's blog at WBTV, and I will also post them here when they are ready. Thanks for all the notes yesterday, as they kept me busy in the waiting room for the 8 hours that I was sitting there yesterday. Talk to you soon!
Love you,
Kyle
Friday, April 24, 2015
Surgery a total success today!
Well, we couldn't be happier than we are today! The purpose of the blog took a little bit of a hit yesterday when Allyson revealed to me that she had volunteered to be a part of WBTV's blog about breast cancer awareness. One of the anchors had heard about Allyson's story and reached out to her internally at work to see if she would be interested in being the subject of a blog that would track her progress.Today started with Allyson, Linda, Erin and I heading to the hospital after dropping Avery off at school. We all got to be in the surgery prep room even though it was against the hospital rules to have more than one person in there with the patient. Luckily the floor supervisor took the day off, so the nurses cut us a break and allowed us all to go in with her, pray together and take some pictures. Allyson was definitely scared, but she was also in some high spirits before heading into surgery.
The blog story can be found here if you have not seen it already:
https://www.facebook.com/WBTVMollyGrantham/photos/a.284389134904910.88562.194220537255104/1073054426038373/?type=1&theater
You can see on Kathy Grantham's blog a very emotional Allyson before she goes in for surgery. It was hard to keep the camera steady as I watched it. My arms weren't long enough to tape it and hold on to her at the same time. That was frustrating!
The first part of the surgery today was to remove the breast tissue from both breasts...this is where they would also go in and test the sentinel nodes for each breast to finally determine whether any cancer had spread to the lymph nodes. This procedure took about an hour total, with the doctor joking that he could probably offer a discount to Allyson because he didn't have much tissue to remove ;). However, he also revealed that no spreading of the cancer was evident, and the die test that they did to test the nodes responsible for the affected areas of the tissue was very evident...so they knew they were testing the right nodes when they removed/tested them. Erin and Linda and I were so happy that we just wanted to hug on eachother. The hair on on the back of my neck was standing straight up as he gave us the good news! The wave of relief that washed over me was so strong that I felt like my knees just wanted to give out. It was a great moment!
Once Erin and Linda left to head home, I stayed in the waiting room and waited for the reconstruction portion of the surgery to get completed. This portion took much longer (about 2.5 hours), but again the doctor came out and explained that Allyson was a great patient and that the procedure was routine and flawless from her perspective. After another 90 minutes, I was finally able to see her as she came up to the room that she would stay in for the night. It was a long day, but well worth it now that we know the positive results.
We won't find out the rest of the pathology reports that reveal what the state of the original cancer is/was in her breast tissue until early next week. These results will ultimately determine how Allyson will be treated from this point forward. If the cancer is still found to be alive and active, Allyson will likely have to leave the clinical trial she is in and go down the road of traditional standard of care for her cancer. This means losing hair, and getting much sicker as she has to deal with traditional chemo. However, if there is no sign of active cancer, then she will stay in the clinical trial and continue with the care that she's been receiving for 18 more cycles (once every three weeks). So we've still got some distance to cover, but the fact that we are focused on a much smaller area of her body means everything to us. The chances of remission are much higher now, and the chances of living a long and healthy life are much greater. Regardless of where she (we) go from here, the chance for a long and healthy life is vastly improved.
For now, I'll leave you with a final picture of Allyson and I tonight...we are very happy with today's progress! We love you all!
Friday, April 17, 2015
Surgery Date set - 24APR15...one week from today
Hi Everyone,
Many of you have heard through the grapevine by now, but Allyson's surgery date is set for 24APR15. She's been meeting with both the surgical oncologist and reconstruction docs to get all of the information and instructions for pre and post-op care...so now we play the waiting game until next Friday.
We've got Erin and Linda flying in a couple days before surgery and they will stay through the 1st weekend. Then Erin flies out and Linda stays with us until Megan arrives the next weekend. Then Megan and Linda will depart at some point early the following week and we'll hopefully be in a position where we are ready to go it alone with her recovery. My family is ready to come down during that time, but I've given them pause so we can feel things out and see how we feel with so much traffic coming into the house. We may need a little downtime and privacy at that point, but we'll see!
Allyson is now 4 weeks after her last chemo session and is in good spirits! She's started running again and is taking good care of herself...so everything is looking good for her to go into surgery in as good health as possible.
We recently had a friend of ours here in Charlotte get diagnosed with Breast Cancer, and she is further along than Allyson was when she was diagnosed....and it has been interesting to reflect on just how quickly this whole thing has developed for us. It is good that Allyson can be there for her friend and help her get through a little better mentally because this is all so fresh for Allyson as well. But it really is surreal that almost 6 months has gone by since this all started. The stress and uncertainty has taken its toll to be certain, but we remain hopeful and optimistic about getting through this next step in the process.
Please pray for and send positive energy to Allyson over the next few weeks. The surgical oncologist will be able to determine immediately in the operating room whether cancer was more widespread than originally thought or has gone into remission. So we SHOULD have results very quickly as well and I will relay that to you. Then we've got an appointment with the chemo oncologist 10 days after surgery to review the full pathology results and decide on the next course(s) of action post surgery. If they find more evidence of cancer during surgery it will mean that she will begin traditional approaches to the disease and start traditional chemo. If they find that the cancer is in remission or not present, then she continues with the clinical trial and what she's been going through to this point.
I'll be posting as much as I can following surgery to keep you all updated. We love you all!
Kyle
Many of you have heard through the grapevine by now, but Allyson's surgery date is set for 24APR15. She's been meeting with both the surgical oncologist and reconstruction docs to get all of the information and instructions for pre and post-op care...so now we play the waiting game until next Friday.
We've got Erin and Linda flying in a couple days before surgery and they will stay through the 1st weekend. Then Erin flies out and Linda stays with us until Megan arrives the next weekend. Then Megan and Linda will depart at some point early the following week and we'll hopefully be in a position where we are ready to go it alone with her recovery. My family is ready to come down during that time, but I've given them pause so we can feel things out and see how we feel with so much traffic coming into the house. We may need a little downtime and privacy at that point, but we'll see!
Allyson is now 4 weeks after her last chemo session and is in good spirits! She's started running again and is taking good care of herself...so everything is looking good for her to go into surgery in as good health as possible.
We recently had a friend of ours here in Charlotte get diagnosed with Breast Cancer, and she is further along than Allyson was when she was diagnosed....and it has been interesting to reflect on just how quickly this whole thing has developed for us. It is good that Allyson can be there for her friend and help her get through a little better mentally because this is all so fresh for Allyson as well. But it really is surreal that almost 6 months has gone by since this all started. The stress and uncertainty has taken its toll to be certain, but we remain hopeful and optimistic about getting through this next step in the process.
Please pray for and send positive energy to Allyson over the next few weeks. The surgical oncologist will be able to determine immediately in the operating room whether cancer was more widespread than originally thought or has gone into remission. So we SHOULD have results very quickly as well and I will relay that to you. Then we've got an appointment with the chemo oncologist 10 days after surgery to review the full pathology results and decide on the next course(s) of action post surgery. If they find more evidence of cancer during surgery it will mean that she will begin traditional approaches to the disease and start traditional chemo. If they find that the cancer is in remission or not present, then she continues with the clinical trial and what she's been going through to this point.
I'll be posting as much as I can following surgery to keep you all updated. We love you all!
Kyle
Wednesday, March 25, 2015
No Surgery date (yet)
Good Morning everyone,
Well, as much as we tried to push things along administratively, the surgeon's office wouldn't have it... They needed to see her before they could work on a surgery date, and then we found out that we had insurance pre-authorizations that needed to be done, and then coordination needed to happen between the surgical oncologist's office and the reconstruction surgeon's office.
The good news is that the insurance pre-authorization went very quickly and came back same day. So now we are in stand by mode as we wait for the two doctors to reconcile schedules and get back to us with a firm date. We are likely looking at two-three weeks at this point.
No other real news came out of her appointment with the surgeon, other than confirmation that this guy's bed-side manner is fantastic, and much better than what we've been getting through the oncologist that we've been seeing for chemo. He actually hugged Allyson at the end of her appointment! She feels very comfortable with this doctor, and very comfortable with the reconstruction doc.
So...as soon as I know more I will post it immediately. Sorry to keep you all waiting!
Kyle
Well, as much as we tried to push things along administratively, the surgeon's office wouldn't have it... They needed to see her before they could work on a surgery date, and then we found out that we had insurance pre-authorizations that needed to be done, and then coordination needed to happen between the surgical oncologist's office and the reconstruction surgeon's office.
The good news is that the insurance pre-authorization went very quickly and came back same day. So now we are in stand by mode as we wait for the two doctors to reconcile schedules and get back to us with a firm date. We are likely looking at two-three weeks at this point.
No other real news came out of her appointment with the surgeon, other than confirmation that this guy's bed-side manner is fantastic, and much better than what we've been getting through the oncologist that we've been seeing for chemo. He actually hugged Allyson at the end of her appointment! She feels very comfortable with this doctor, and very comfortable with the reconstruction doc.
So...as soon as I know more I will post it immediately. Sorry to keep you all waiting!
Kyle
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