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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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.

Continue reading “A Hard Recovery”

A Proposal of a Plan

After several tests and consultations, meetings and review of the pathology (I carried slides and pieces of my appendix in my shoulder bag on the airplane, and the team here has been able to look over the work done by the lab in South Africa, as well as make their own slides), the team at Penn has come up with a proposed treatment plan for us. Continue reading “A Proposal of a Plan”

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.

Travel

Travel with two toddlers, one cancer patient, four tired adults, 7 pieces of carry-on hand luggage and 14 pieces of checked baggage was a little daunting to think about.
We had a tearful, beautiful, sendoff, so much good help at the airport and then a smoother trip than I could have wished for. The kids slept so well, were fantastic while awake, and after nearly 40 hours of travel, we made it to our new home, Coleman’s parents’ house in beautiful Huntingdon Valley, PA. (Right next door to Bryn Athyn)
Thank you for all of your prayers, love and support!

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!