Some hard news about Eleanor’s health

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Eleanor and Maggie (the doll) looking at all the neat things at CHOP…

 

At the end of November Eleanor will be having minor surgery to remove two pre-cancerous lesions from her scalp.

 

About a year ago I (Anne) noticed a strange mole on her head while doing her hair. At first I thought it was a birthmark that I somehow had missed for the first year and a half of her life, but over the next several months noticed changes. We went back and looked at pictures of her bald baby head and can say definitively it was not there at a year. After that she had too much hair to tell. We spoke with her doctor and decided to continue to monitor it. Over there next few months it continued to change and grow and a second mole appeared, about two inches away. We took her to see a dermatologist who expressed concern and sent us to a specialized team at the Children’s Hospital of Pennsylvania (CHOP). We had a consultation with them a few weeks ago where they confirmed the dermatologist’s concerns and told us they believe there is a risk the lesions will become melanoma if they are left untreated. The treatment plan is surgery, to remove both moles, and it is our prayer and hope that we have caught this early enough and that the pathology will show they remain precancerous or very early stage melanoma and that surgery will be considered curative. Both Melanoma and pre-cancerous pigmented tumours are quite rare in children, but there is a multi-disciplinary team at CHOP set up to deal with whatever follow-up care she needs. She will need some form of regular checks in the long term, as whatever genetic mutation that allowed for these two tumours to grow still exists and increases her risk for melanoma for the rest of her life. We pray that we will be able to be diligent in checking her skin and protecting her from additional risk factors (like sunburn).

 

After the surgery it will take one to two weeks for us to get the pathology reports back.

 

Eleanor is in good spirits. She has some pain and discomfort at the spots on her head, but is otherwise well. She considers going to the doctor to be a fun adventure and is looking forward to her surgery. It will be a brief outpatient procedure performed under general anesthesia at one of the best children’s hospitals in the country. We liked the surgeon we consulted with and are confident in his care – he is the head of pediatric plastic surgery and has over 30 years of experience.

 

We are stunned and concerned but also comforted by the same things that comforted us when each faced with our own cancer diagnosis – God is good, He does not will evil, He weeps over our suffering and He will bring good out of this. It is our fervent prayer that Eleanor does not have cancer, but we are not desperate, or despairing – we are not hopeless. Our hope is in the Lord, and we have peace, “that He directs all things, and provides all things, and that He leads to a good end.

 

We recognize that this is another hard thing our family, and to those who love us. It can feel like a blow, a sucker punch, like the wind has been knocked out of us. Loving people who are hurting and who continue to hurt is hard. It is traumatic to learn that someone you love is facing trauma. Please don’t minimise your own responses to this. We have considered carefully how to balance our desire to be open and honest to to rely on you, our community, and your loving hands to hold us. When it gets hard, seek help for yourself. Turn to each other, to your own circles and ask for help, for support, for comfort and love. Rely on the strength of the people who love you and on God’s grace for this.

 

Thanks for continuing to walk with us through the hard.

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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!

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.

Continue reading “A Successful Surgery”

Surgery Tomorrow

Tomorrow is my surgery at the University Hospital of Pennsylvania. I’m scheduled for 1:35pm, so our best guess is that I’ll be in the operating theatre around 2 and that the surgery will be about 3 hours, maybe more. We will leave for the hospital around 10:30 in the morning.

Coleman will be at the hospital during the surgery, and probably overnight with me. My parents (Scott and Beth) will be with Coleman at the hospital and will leave after the surgery. Coleman’s parents (Michael and Hilary) will be at home with our children, Samuel and Eleanor.

We have talked through lots of possibilities and contingencies, and we feel confident that this is the right decision for us. We are confident in the medical team’s skill, judgement and care. We trust the Lord for our strength. We have a great deal of peace.

Thank you for your prayers, for your love. We feel them keenly and are so encouraged by them. It is amazing to be carried by your love.

A Plan

On Thursday of last week Coleman and I met with our surgical oncologist, Dr. Roses, and his chief resident to discuss our options and make some plans. With all of the tests back, and several other opinions sought, he confirmed some of what we thought we understood and reaffirmed some of what we had discussed before:

– I have Stage IV cancer, which sounds terrifying, but is really just a description of how far it’s spread, not how widely, and in NET cancer is not really indicative of prognosis – many, many people are stage IV when it’s found, and have a (relatively!) good prognosis. I am barely a stage IV, and am in much better shape than many other patients at this stage. Grade, how each tumour is measured, is a better indication of prognosis, and both of my tumours were Grade 1 – the lowest, the best. Continue reading “A Plan”

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.

An Unexpected Test Result

Celiac disease is a genetic autoimmune disease that causes the body’s immune system to attack the proteins that make up what we call gluten (found in wheat, barley and rye). This autoimmune attack creates a toxin that destroys the villi of the small intestine, leaving sufferers unable to properly absorb nutrients. Untreated, it can lead to (among other things) nutritional deficiencies, failure-to-thrive, diarrhea, constipation, bloating, anemia, infertility, miscarriage, kidney damage, liver failure and eventually, death. Continue reading “An Unexpected Test Result”

A call and an answer

Therefore Eli said to Samuel, “Go, lie down; and it shall be, if He calls you, that you must say, ‘Speak, Lord, for Your servant hears.’” 1 Samuel 3:9 (NKJV)


 Also I heard the voice of the Lord, saying:

“Whom shall I send,
And who will go for Us?”

Then I said, “Here am I! Send me.” Isaiah 6:8 (NKJV)

In November of 2013 we answered a call to the New Church Westville, in Durban, South Africa. Continue reading “A call and an answer”