A Year Later

(Picture above is from the first day of spring, enjoying our free Rita’s water ice.) A year ago today (well, a year ago yesterday by the time I’m actually posting this), we were told that Anne had malignant, metastatic neuroendocrine carcinoid tumors. I’ve been looking back over emails and notes from those first few days after we found out, and man, what a whirlwind. I want to talk about some of that, but first, an update on where we are now, since it’s been three and a half months since our last update… sorry!

What’s Been Going On Since December

It’s hard to believe that we’re almost a third of the way through 2017. In February and March, a team of our friends in South Africa worked tirelessly to pack and prepare all of our belongings to be shipped around the world to our new house here. Meanwhile back here in the U.S., construction workers knocked out a wall, ripped up carpets, and replaced flooring in our new house.

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A Belated Update

Hard to believe it’s been almost two months since our last update. Rather than try to capture everything in the last few months in detail, here’s the bullet-point version – with pictures!

October 15 – NET Cancer awareness fundraiser at Bryn Athyn Bounty farmer’s market, with proceeds going to the Neuroendocrine Cancer Awareness Network.
bounty-booth

November 8 – A trip to the ER; Anne had intense abdominal cramps and pain, to the point that the pain required narcotics. It passed and Anne was feeling much better by the next day, but she has had consistent, daily, really bad stomach cramps since then. It’s the big mystery at the moment; there doesn’t seem to be a physical blockage, but the cause could be anything from a reaction to the lanreotide, to adhesions from the surgery, to a recurrent ileus (intestinal paralysis), to any number of other things. Anne will skip her upcoming lanreotide injection to see if that makes a difference; the lanreotide has been effective in reducing symptoms like flushing and heart palpitations, but we want to see if it might be responsible for the abdominal pain. If it is, we’ll talk to the doctors about reducing the dose or switching to Sandostatin, another drug that acts very similarly to lanreotide.

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An Announcement and a Plan

As we’ve mentioned in previous posts, Anne’s treatment has not been nearly as straightforward as we’d expected; in fact, our surgeon said that “never in [his] wildest dreams” did he expect this many complications. After a lot of discussion and reflection and prayer, we’ve come to the conclusion that with all the unanswered questions, and the need for constant treatment and monitoring, we won’t be able to move to Canada after all. Instead we will be settling in Bryn Athyn for the foreseeable future.

This wasn’t an easy decision. Anne and I were excited at the idea of living in Toronto, a city we both love, and serving at Olivet, a congregation that feels like family. But from the beginning we’ve known that if things didn’t go smoothly, plans would have to change, and we’re happy to be in a community with friends and family who have welcomed us with open arms. We’re not sure yet what work I will be doing for the church in the 2017-2018 year, but there are several possibilities. My parents have generously offered to let us live with them for as long as we need to, but we are looking for a more permanent home (ideally a one-story, 3+ bedroom house for recovery from future surgeries, etc.; let us know if you hear of anything available!).

So, that’s the announcement side of things. The plan side is this: starting some time with in the next month, Anne will begin monthly lanreotide injections. These injections are intended to deal with symptoms of carcinoid syndrome, and can also slow tumor growth. Anne has a lot of unexplained symptoms that may or may not be caused by the syndrome, e.g. tachycardia and low blood pressure, and we’re hoping that the monthly injections will make a big difference in how she’s feeling. Even if they don’t, it will give us a better idea of what symptoms are carcinoid-related and what still has unknown cause. As I mentioned in our last post, a lot of people notice a fairly dramatic difference with lanreotide, so we’re hopeful this will be the case for Anne.
We’ve been given an unbelievable amount of love and support from people all over the world since Anne was first diagnosed back in April. Words can’t express how grateful we are for the love you’ve all shown us and continue to show us. Thank you!

Top Ten Takeaways from the National NET Patient Conference

Last week, Anne and I attended the National NET Patient Conference in New Orleans, presented by NCAN (the Neuroendocrine Cancer Awareness Network). It was an amazing experience. Here, in no particular order, are our top ten takeaways:

1.) We’re not alone.

Before the conference, we had met only one person with neuroendocrine tumors, back when Anne had her Gallium scan in Pretoria. I can’t put into words how much it meant to talk with people, laugh with people, cry with people who not only know what NETs are (which already puts them ahead of 99% of the population), but who know intimately what it means to live with this disease. It’s not a club that anyone asks to join, but it’s an amazing community full of passionate people who are willing to fight for each other and lift each other up.

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Another Bump in the Road

As Anne mentioned in her last post, we were back at HUP today to find out the source of the abdominal pain and nausea she’s been having since Monday. They did a CT scan and discovered several small abscesses with fluid collections. They followed that up with an ultrasound that showed the collections to be tubo-ovarian abscesses, probably caused by exposure to bacteria from the surgery or from the insertion of the previous drains. This is a fairly rare type of abscess to have after a surgery like Anne’s, and the surgical team is working with the gynecology department to figure out the best way to deal with it. Unlike the last abscess they found, these ones do not seem to be reachable for drainage, so the plan for now is to admit Anne into the hospital and have antibiotics administered by IV here at the hospital for a few days, then re-evaluate based on whether the infections respond to the antibiotics.

It’s frustrating and tiring to have yet another complication; Anne’s surgeon says that he has never had another patient with this many complications after this kind of surgery. We’re learning to take it a day at a time, a moment at a time, but we’re not always great at it. I think we sometimes make it sound like we’ve got it all figured out. We don’t. We get grumpy at each other, annoyed at the odd unhelpful nurse, glum about all the setbacks. But we pray, and we read Scripture, and we turn to our friends, and we try to make each other laugh, and we let the Lord lift us up again. And tonight, we’re doing OK. God is still good, and we know we are loved.

A Hard Recovery

It’s been hard week. On the whole, Anne is moving in the right direction; she’s certainly doing better now than she was a week ago. But in terms of how she’s been feeling, it’s been a case of a few steps forward followed by a few steps back, over and over. The following includes some of the (slightly) gory details, so consider yourself warned if you’re squeamish.

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A Successful Surgery

Anne has come through surgery successfully, and after a few bumps in the road, she seems to be recovering well. The most important news coming out of surgery is that there were no visible tumors in Anne’s peritoneum, ovaries, intestines or anywhere else. We also got some good news from the pathology of the surrounding lymph nodes: only 2 of 39 had cancer. 2 is not as good as none, obviously, but it would have been VERY surprising to have no lymph nodes involved given the extent of the original appendiceal tumor. We haven’t had a chance to talk at length with the doctor about that news, so we don’t know much about the implications, and we’ll share more in a future blog post.

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Liver MRI Results

As Anne mentioned in the last post, we were waiting for one final test result before moving forward with treatment: an MRI to look more closely at a possible liver lesion that had showed up on one of the previous scans. We get results from the MRI yesterday, and it’s good news: there is no evidence of any lesions in Anne’s liver! The MRI was normal, with no signs of advanced cancer, or anything of concern or note anywhere. (It is not especially sensitive and would only pick up large tumours.)

As Anne mentioned in the last post, given the extent of the primary tumor and the fact that it has metastasized, we have to assume that there are still tiny micro-metastases in her body, and for the rest of her life we’ll have to try to stay ahead of them and deal with them as they grow and show up on scans. But it is very good news that there are no visible tumors in the liver!

Our plans are the same as Anne mentioned in the last post: we’ll meet with our surgeon on June 30th, and we expect that at that time we’ll set up a date for a right hemicolectomy, probably for mid-July. Because there does not seem to be any disease in the liver, there’s a possibility that this surgery will significantly improve prognosis, since it could dramatically slow the cancer’s movement toward major organs.

Thanks to everyone for the help and support and prayers – this is a long, slow road, and we are only able to walk it because of the Lord’s help and the unflagging love you’ve shown us.

First Visit to Penn Medicine

We’ve had the good fortune to know a lot of excellent South African doctors. Samuel was delivered in Dawson Creek, BC by Dr. Brussow – a South African doctor. Anne’s cancer was discovered at Crompton Hospital in Pinetown, South Africa by Dr. Garrib – a South African doctor. And now we’ve travelled halfway around the world to see an expert in neuroendocrine tumors at Penn Medicine in Philadelphia, Dr. David Metz – a South African doctor. (He scolded us for never making it out to the berg or up to Hluhluwe in the two years we lived in Durban – we’ll have to make sure it happens whenever we visit South Africa next!).

We had our first visit with Dr. Metz at the Perelman Center for Advanced Medicine yesterday. It went well. We had good conversations with the nurses and research assistants as well as Dr. Metz, and we feel reassured that we’ve made the right choice to come here; as hard as it was to leave South Africa, it’s very good to be at a center where everyone is thoroughly familiar with the ins and outs of NET cancer. We didn’t expect to learn much new information at this visit, and we didn’t get it – but we did get a plan for how we’ll get that information that we need to move forward.

That plan involves testing – lots of testing. They took nine vials of blood for testing yesterday; fortunately we had some time to sit and eat something afterward before we had to catch the train. (We took advantage of the chance to have lunch with our friend Annika, who happens to work on an upper floor of the Perelman Center dissecting fruit fly brains to study circadian rhythms.) They’ve scheduled an endoscopy and colonoscopy for June 6th, which among other things should help differentiate between symptoms caused by the cancer and symptoms caused by other factors (e.g. endometriosis, ovarian cysts, celiac disease, IBS, etc.). They’ll also review all the digital images from the scans Anne has already had and do their own tests on the physical tissue blocks and slides from the tumors that were removed during the original surgery.

We continue to be in awe of the love and support we’re getting from people here and around the globe. Amidst the hardness and the exhaustion and the frustration, there are constant reminders that the Lord is here, and that He is good.

Moving Day

One month ago today, Anne’s gynaecologist Dr. Garrib called us into his office and told us the bad news – a carcinoid tumour had been found in Anne’s appendix, with a metastasis in the pelvic wall. Over the next week, as we researched neuroendocrine tumours, it became clear that we would need to seek specialised treatment overseas, and we’d have to leave South Africa. We gave ourselves a month to wrap things up here – and today is the day we pack up and leave for the U.S.!

It is amazing the way the timing has turned out. We picked today as our departure date several weeks ago, before we even had all of our tests scheduled. As it turns out, we were able to have our last test on Thursday of last week, got results this Monday, submitted paperwork to Penn Global Medicine the same day, and have just today made payment and been accepted for diagnostics and treatment at the Hospital of the University of Pennsylvania.

Oh, and the results of that last test? They’re very encouraging. We’re still only cautiously optimistic – Anne has on-going symptoms that we still need to dig into – but the gallium scan did not reveal any tumours at all. Even her liver, where a previous scan had showed a “suspicious lesion,” appears to be clear. Whatever the explanation – false positives on a previous test, a false negative on the more accurate one, or a miraculous healing – we are so grateful to God for the news. It leaves open questions, but it’s the best news we could have hoped for.

And so we go with confidence that we’ve made the right decision and confidence that Anne will get the best care possible. But we’re leaving with heavy hearts. Every goodbye is a reminder of the dreams we’re letting go of – the just-blossoming friendships, the kids who would grow up with Samuel and Eleanor, the team that would lead the school into its next chapter, and on and on. It’s hard. It hurts. We just keep praying and trusting that the Lord is in charge and that He leads to what is best. But it still hurts.

Today that sadness is mostly a background throb, though – front and centre is the fact that we have only a few hours left to finish packing 14 pieces of luggage and 7 carry-on bags, and then to schlep all that and 5 adults and 2 toddlers to the airport! (Our dog Winston has already been sent to a kennel for a few days; he’ll fly next week and we’ll collect him in the U.S.) Please pray for grace and peace as we make the final push to go. We’re so blessed to have had an army of people willing and ready to help us here over these last few weeks and days, and to have an army of people in the U.S. ready to help as soon as we land, and an army around the world lifting us up in love and prayer. We don’t always get a chance to respond to all the messages we get, but we deeply appreciate each and every one of them. Thank you!