When we decided to create this account, we thought we would be keeping you up to date on ‘Allie’s Gutsy Journey’ (as she calls it) to a bowel transplant. It has turned into something else.
A little bit about intestinal transplants:
To qualify for a transplant, you have initial appointments/meetings. Those are followed by multi-day transplant evaluations where you meet with a large team of doctors, have a plethora of tests; get poked, prodded, scoped and scanned. It’s a tough week. Once all of the data is in you are either approved with an invitation to be placed on a transplant list, or declined.
We were planning to have 3 evaluations: Georgetown University, Mt. Sinai and Columbia University.
Allie was evaluated at Georgetown University the week before last. Everything seemed to go well, then at the wrap-up meeting on Thursday she was neither approved nor declined. Instead we were told that her PetScan showed hyper-metabolic activity which could indicate an infection, inflammation, or a few other relatively innocuous things. However, it could also indicate a malignancy. The surgeon was extremely startled and seemed pretty damn sure this was the case. We knew there was a slight chance that Allie’s tumor could transform into a malignancy called NPST, but that is rare.
The tone of that meeting was so different from the previous days. The surgeon was clearly upset, and his sense of urgency was overwhelming. He wanted to move quickly, and reserved a time slot in the OR on the following Tuesday for a biopsy. Allie still had a 3 tests scheduled for Friday. There was a chance that the GI doc could get samples during the Endoscopy or Colonoscopy. If the pathology results were negative, she would still need a biopsy. If anything came back positive the Tuesday biopsy could be cancelled. The GI doc took 3 samples and sent them for analysis. We cancelled the biopsy surgery. Then came the torturous wait for results.
On Tuesday, the results were posted. Sample 1: negative. Sample 2: negative. Sample 3 was not as kind. It was positive for Adenocarcinoma of the small bowel (not PNST). This is extremely rare.
A transplant is now off the table for the foreseeable future because the immunosuppression drugs that are required after a transplant wreak havoc on cancer cells, even one of them. Instead of a transplant, Allie will have to have most of her small intestine removed followed by treatment for the cancer.
Since we got the news,: - We had more conversations with the Georgetown team. - We spoke with some of Allie’s NYU docs. After reviewing the Georgetown Pet Scan they believe that Allie may have PNST and Adenocarcinoma. Nobody gets both. That would be extremely rare. Allie’s Neurologist knows some people at MSK and said he would reach out to them. -We spoke to the surgeon at Mt. Sinai where Allie was scheduled for her next evaluation.
Before that conversation we were thinking that he would probably do the surgery and then we would follow up with treatment at MSK.
However, he feels that Allie would be best served to have MSK do the surgery and treatment as well. He said Allie’s condition is so rare that literature on it is virtually nonexistent. He also knows people at MSK and promised to reach out to them.
We let the Neurologist know that Mt. Sinai was not going to do the surgery. He reached out to MSK immediately and was able to get Allie an appointment with a surgical Oncologist there.
The Mt.Sinai surgeon reached out to the chief of surgery in the same department at MSK.
So, we are soon off to MSK to get their opinion on all of this. Hopefully, they can do the surgery and we can get started on taking care of this.
After that little appointment, we’ll run over to NYU so that Allie can have her bi-weekly Paracentesis(abdominal tap). The team in Interventional Radiology where the taps occur is very fond of her. The say she is their favorite patient, and they fight over who will be assigned to her. They are going to be devastated when we give them this news.
Everything about this 2 year/9month journey has been tagged as ‘rare’. We should have kept a running count on how many times we heard ‘rare’, ’we’ve never seen anything like this’, ‘we don’t know what to do with you’, ‘we reached out to folks in our network and they haven’t seen it either, etc.
We will try to get updates posted here on a timely basis so that you can check in to see what’s happening with our FEARLESS Allie.
Thanks for visiting and reading.
We love and appreciate all of you.Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Allie has been in MSK Memorial for the past 9 days.
She was feeling awful on Wednesday Apr 3rd and was instructed to go to the MSK Urgent Care (that is what MSK calls their Emergency Department.)
She was admitted and spent an hour or so in a ‘regular’ room but was quickly sent to ICU. She spent 4 nights there. Her old PICC was removed and a central line was put in her neck. One would have thought there was nowhere else to put a tube or iv. Ha!
A CT scan showed what I will refer to as a ‘newly discovered’ blockage. It is unclear as to whether this is something new, something that was previously hidden from view, or debris from a tumor we already knew about breaking up. This blockage causes most food and drink to go thru her system to a certain point and not any further. Some of it does get past the blockage, and that is a good sign.
She was moved to the non-ICU floor on Saturday where she is now.
And yes, they found a new place to stick a tube: her stomach! It is helping her feel better but who wants that?!
We are anxious to get out of here, get back to treatment, get rid of that blockage, and get rid of that tube!
So, please continue to keep Allie in your thoughts and keep sending those good vibes.
A special note to those of you who know Allie well, she has an appointment to visit with one of the therapy dogs this afternoon. This might need an extra dose of good vibes to actually make it happen.