Journal entry by Jessie Rankin —
Happy Monday, everyone.
Quick update here on how the first week of radiation went and some convos we had with some of the oncology team members from different places.
First thing last Monday, Tim had his 5th ERCP and stent replacement; it went well and then I took him straight to Gibbs for his first radiation treatment. He also started the oral chemo pills which are five pills in the morning, five pills in the evening. I honestly think that might have been the worst of it last week having that hit his system twice daily. There were a few times where he got sick, but mainly he just didn't feel well, was tired, and had a lack of appetite. That said, we've got a little routine in the mornings that is working and we will keep that up with me taking him, or if I can't, then we've got help and he's got rides. Tim is hoping he can drive himself, and he can, but I am just being overly cautious.
By Friday afternoon, he was feeling pretty good and I believe a part of that was just knowing that he had a break from the chemo pills and the radiation for two days. He had a good, restful weekend, got some things done around the house, and then met Mags and me for a late lunch after Peter Pan yesterday.
He did have a conversation with Dr. White (MUSC Transplant team) and MUSC does not think he is a candidate for transplant at this time. They think that the risk of the main portal vein's proximity to the tumor is too risky. We talked to Dr. Aucejo from Cleveland Clinic on Thursday afternoon and there is a plan there. They think they see what they are calling a "hot spot" on a lymph node near the tumor location, so they want to perform an endoscopy to biopsy the node. This would involve a trip back to Cleveland because Dr. Aucejo wants to have it performed by his team. If the biopsy came back benign, then they would proceed with a surgery to 100% confirm that it is benign. We are currently waiting for that team to get in touch to schedule that, but it wouldn't happen until after radiation is complete, which would be June. We don't know if the biopsy results would be back in enough time where both procedures- the upper endoscopy and the surgery- could happen in one visit, or if we are looking at two separate trips. After the surgery, then Dr. Aucejo would revisit transplant protocol to start the process of getting Tim on a transplant list. We are still waiting to hear back from Houston Methodist about the special case transplant presentation to their tumor board. Again, lots of waiting, and if you know me, you know that is not my strong suit.
Right now we are holding strong to the radiation plan of Dr. Kilburn (radiation oncologist) whose goal is not to placate the tumor but to obliterate it. That would be the best case scenario upon completion of these six weeks, so I ask you all to be specific in your prayers if you are praying over Tim. He is having labs drawn tomorrow which we are eager for those results as we've noticed some yellowing of Tim's eyes and are hoping that there isn't another blockage, so we're waiting to hear back from his GI doctor and see what the bilirubin comes back at before we take action for that.
A lot of you have asked what you can do to help over the next five weeks and so Pressly Roberts has fired up the mealtrain again, so it's linked here: Rankin Meal Train. With the end of school and the millions of activities that come along with that, plus work for me, and a potential trip to London/Barcelona next month, it really is nice to have one less thing to worry about (because most of you know that cooking is just not my favorite). Also, if any of you would be willing to give Tim rides to radiation on days when i can't or he's not feeling up to driving, that would be wonderful, too.
As always, I just cannot properly put into words our gratitude and appreciation for all that our friends and family have done to help us out with the most mundane things. Our sweet friends Kat and Morgan helping clean up the other week when the housekeepers skipped a week, our sweet Tonya for always being there for Maggie and taking care of her and spoiling her like crazy, our sweet neighbors Eric and Jenn for yummy food and helping out with some tasks around the house, Coco and Papa for keeping Mags overnight so we could go on a date together, Pressly for having Mags over for a last minute playdate, the prayers, the check-ins, the list goes on and on and we just love and are so grateful for you all.
For this week, pray that it goes well and Tim feels better than last week. Pray that the radiation is working and Dr. Kilburn's goal of ridding Tim's body of the tumor is successful. Pray hard that it continues to not spread and grow. We feel ALL of these prayers and know God has a plan for Tim.
I will update next weekend or first of next week unless there is new news.
Love to you all,
Jessie
Quick update here on how the first week of radiation went and some convos we had with some of the oncology team members from different places.
First thing last Monday, Tim had his 5th ERCP and stent replacement; it went well and then I took him straight to Gibbs for his first radiation treatment. He also started the oral chemo pills which are five pills in the morning, five pills in the evening. I honestly think that might have been the worst of it last week having that hit his system twice daily. There were a few times where he got sick, but mainly he just didn't feel well, was tired, and had a lack of appetite. That said, we've got a little routine in the mornings that is working and we will keep that up with me taking him, or if I can't, then we've got help and he's got rides. Tim is hoping he can drive himself, and he can, but I am just being overly cautious.
By Friday afternoon, he was feeling pretty good and I believe a part of that was just knowing that he had a break from the chemo pills and the radiation for two days. He had a good, restful weekend, got some things done around the house, and then met Mags and me for a late lunch after Peter Pan yesterday.
He did have a conversation with Dr. White (MUSC Transplant team) and MUSC does not think he is a candidate for transplant at this time. They think that the risk of the main portal vein's proximity to the tumor is too risky. We talked to Dr. Aucejo from Cleveland Clinic on Thursday afternoon and there is a plan there. They think they see what they are calling a "hot spot" on a lymph node near the tumor location, so they want to perform an endoscopy to biopsy the node. This would involve a trip back to Cleveland because Dr. Aucejo wants to have it performed by his team. If the biopsy came back benign, then they would proceed with a surgery to 100% confirm that it is benign. We are currently waiting for that team to get in touch to schedule that, but it wouldn't happen until after radiation is complete, which would be June. We don't know if the biopsy results would be back in enough time where both procedures- the upper endoscopy and the surgery- could happen in one visit, or if we are looking at two separate trips. After the surgery, then Dr. Aucejo would revisit transplant protocol to start the process of getting Tim on a transplant list. We are still waiting to hear back from Houston Methodist about the special case transplant presentation to their tumor board. Again, lots of waiting, and if you know me, you know that is not my strong suit.
Right now we are holding strong to the radiation plan of Dr. Kilburn (radiation oncologist) whose goal is not to placate the tumor but to obliterate it. That would be the best case scenario upon completion of these six weeks, so I ask you all to be specific in your prayers if you are praying over Tim. He is having labs drawn tomorrow which we are eager for those results as we've noticed some yellowing of Tim's eyes and are hoping that there isn't another blockage, so we're waiting to hear back from his GI doctor and see what the bilirubin comes back at before we take action for that.
A lot of you have asked what you can do to help over the next five weeks and so Pressly Roberts has fired up the mealtrain again, so it's linked here: Rankin Meal Train. With the end of school and the millions of activities that come along with that, plus work for me, and a potential trip to London/Barcelona next month, it really is nice to have one less thing to worry about (because most of you know that cooking is just not my favorite). Also, if any of you would be willing to give Tim rides to radiation on days when i can't or he's not feeling up to driving, that would be wonderful, too.
As always, I just cannot properly put into words our gratitude and appreciation for all that our friends and family have done to help us out with the most mundane things. Our sweet friends Kat and Morgan helping clean up the other week when the housekeepers skipped a week, our sweet Tonya for always being there for Maggie and taking care of her and spoiling her like crazy, our sweet neighbors Eric and Jenn for yummy food and helping out with some tasks around the house, Coco and Papa for keeping Mags overnight so we could go on a date together, Pressly for having Mags over for a last minute playdate, the prayers, the check-ins, the list goes on and on and we just love and are so grateful for you all.
For this week, pray that it goes well and Tim feels better than last week. Pray that the radiation is working and Dr. Kilburn's goal of ridding Tim's body of the tumor is successful. Pray hard that it continues to not spread and grow. We feel ALL of these prayers and know God has a plan for Tim.
I will update next weekend or first of next week unless there is new news.
Love to you all,
Jessie
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