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Today I told my child that she might have cancer

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A recent photo of the two of us, sleepy at bedtime. Almost 3, but still loves to cuddle in the sling.
[NOTE: Just to be clear, the doctors expect that Eleanor’s moles will turn out to be pre-cancerous lesions – they will be surprised if they discover cancer. But it is at least a slight possibility, and because we’ve talked freely about cancer in our household, it is part of the conversation.]

From Anne:

(This was written the day it happened, but I’ve held it back until we wrote the previous post announcing Eleanor’s pre-cancer diagnosis and surgery plans).

Today I told my child that she might have cancer. 

She was asking me about some of the medical supplies in our bathroom. She wanted some for herself and I explained that they were just for me, because of my cancer.

She looked up at me and said “Do I have cancer?”

“I don’t know.” I told her.

“I wish I had cancer.” She said it wistfully.

“Come, my girl. Sit here with me. We need to talk.” We climbed up into the big lounge chair in my bedroom. “Why do you wish you had cancer?”

“Because my tummy hurts and then I could go to the doctors, like you!” There’s toddler logic here. Doctors are pretty exciting to our kids. They are calm and confident little patients, submitting cheerfully or at least willingly to just about everything, even needles (or shots, as they call them – so if my kids ever tell you they shot someone, ask if they were playing doctor). So if her tummy is hurting (she’s fighting a cold), she believes doctors can make it better. What sweet innocence and trust. Also, she wants to do everything Mama does. And Mama goes to the doctor a lot.

“I’m sorry your tummy hurts. But I don’t think that’s cancer. Cancer is a bad thing, my girl. It’s not something to wish for and it’s evil. Doctors can help take care of cancer though. Daddy had cancer, and the doctors gave him medicine to stop the bad cells and help the good ones. I have cancer and the doctors cut it out to slow it down.”

“Do I have cancer?” She asks again.

“I don’t know, Eleanor. The spots on your head – we don’t know if they are cancer or not. After your surgery to take them off, the doctors will check them under a microscope to see if they are cancer.

Look at me, my girl, right into my eyes. This is important.” She looked up at me with wide eyes.

“If they are not cancer, we will love you and take care of you, and the Lord will always be with you. If you do have cancer, we will love you and take care of you and the Lord will always be with you. Do you understand?”

She nods slightly. I ask her if she has any questions for me or if there is anything she wants to tell me. She shakes her head no. I ask her how she is feeling and she takes a deep breath and says “Happy, happy, happy!” in a high-pitched, silly voice, which is what my kids say when they don’t want to talk about their feelings.

She leans in for a hug and I tell her I love her. Then she hops down off my lap and off she goes.

I sit for a moment and just grieve, aching for my child who is so young, has endured so much and is so loving and generous and kind and trusting.

It wasn’t my intention to tell her she might have cancer. We haven’t used that word to her, although she was in the room while we talked about it with the doctors. The first one carefully only used the word ‘malignant’, knowing our history and that she knows the ‘C’ word. The second team didn’t know our history (and who would assume a not yet three-year old knows what cancer is) and so were a little more casual with their terms, which, to be honest, did not bother me. Our philosophy is to be honest, upfront and simple in our explanations to our kids about their bodies and health and our bodies and health. She was distracted at the time and I’m not sure how much she picked up. But she’s pretty observant and it wouldn’t at all surprise me if she’d caught every word and took her time to process and this conversation was just waiting for an opportunity to happen.

I feel sometimes so calm about this all and I wonder if it’s because if I think about it too much I might shatter. I’m grateful for my therapist, for that space and safety to process, for the affirmation that I did the right thing, said the right words, loved her well. For the reminder that I do really well in crisis mode, and that’s where we are until we know what comes next, and this calm is okay, it’s real, it’s a gift.

I’m grateful for my husband, for his steadiness. He is still comforted by statistics (I’m not, cause you know, rare diseases over here!) and the odds are this is not-benign-but-not-yet-cancer at best, or only-just-cancer at worst. The odds that is will require more treatment than just this surgery are so tiny and I am so grateful that he is comforted by that, because I am comforted by him.

I’m grateful for the love that has poured in as we’ve shared and the promises of community, of shared burdens, of holy connections and sacred friendships that reassure us we do not face this alone, but with the whole host of heaven and a whole lot of earth by our side.

But sometimes I just have to sit in the grief. Today I told my child she might have cancer.

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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.

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.

Continue reading “A Year Later”

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.

Continue reading “A Belated Update”

Hormones, Hair Loss and Halloween

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It’s been nearly a month since my first Lanreotide injection. I’ve had some good results – small reductions in symptoms and just enough more energy and steadiness to make life feel more manageable. I’m up and about, have gone out a couple of times without my wheelchair, and even on a couple of excursions without Coleman – to yoga with a friend, to the hair salon.

Hair. My hair is falling out. It was falling out before I started the treatment, most likely due to hormone issues (it’s been falling out for over a year!) but the rate has distinctly increased, a side-effect we knew was a possibility. So, I’m planning on shaving my head. Since I’m going to shave it anyway, I decided, why not have a little fun for Halloween?

Coleman and I attended a masquerade ball with a ‘fire and ice’ theme, and I decided to go ‘ice’. White hair is fun, still a bit of a shock when I look in the mirror, but fun! Stay tuned for buzz cuts, coming next week!

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On Halloween night we dressed up with the kids and took them to the girl’s dormitory at the high school where they were given puzzles pieces and cards (thanks for accommodating our food allergies!) and got to see all the fun costumes and decorations the girls put together. We especially enjoyed Hogwarts, and Around the World!

The Farmer, the Dancer and the Dinosaurs

The bad news is I have a partial bowel obstruction. It’s been an on and off thing for the last month and has worsened in the last few days. We’re in touch with my team, trying medication and diet to help improve things. I’m managing fine at home, but will go in to the hospital if necessary. The worst part is the pain, which seems to be worse in the evening and at night than during the day – while being up and moving seems to help at the time, increased activity brings increased pain when I stop moving. We’re hoping things improve and continue to heal and that I get closer to ‘normal’, but this is likely going to be a condition I live with for the rest of my life, with better moments and worse moments.

Other medical updates: this month we do more testing to try to narrow down my bleeding disorder, visit maternal-fetal medicine for follow up OB/GYN care and see a dietician who will hopefully help us understand what I need in the way of supplements and how best to eat now that my digestive system has been rearranged. I also have my next injection of Lanreotide tomorrow, and we hope it will continue to help me stabilize.

November is NET cancer awareness month and Nov 10 is NET cancer day. Watch for more blog posts with updates on what we’re doing in the NET cancer community and what your support means to us. Thanks for journeying with us!

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.

Continue reading “Top Ten Takeaways from the National NET Patient Conference”

Back and forth and home again

I’m home again!

The consensus from the team was that while we know SOMETHING is wrong, I didn’t need to be trapped in the hospital (woo hoo!) and could be freed to return to these bouncy babies.

There’s a lot going on, symptom-wise and a lot of possible answers. There could be one or two explanations that cover everything, or a half-dozen things colliding at once. We need more time and more tests to rule things out and count things in. So, are next few weeks look like this:

Sunday September 18: Coleman preaches at the Bryn Athyn Cathedral (9:30 and 11)

Monday September 19: AM Lab work, PM Visit to the immigration doctor for Green Card paperwork

Tuesday September 20: Primary Care Doctor

Wednesday September 21: Fly to New Orleans for the 2016 NCAN NET Patient Conference! Two and a half days of talks and panels with over 20 world-leading experts on NETs and 400+ patients to meet and talk with! (Conference is Thurs-Sat, with an extra meeting on Sunday).

Monday September 26: Fly home from New Orleans

Wednesday September 28: Cardiologist

Thursday September 29: Follow-up with Surgical Oncologist, Follow-up with Resident Gynaecologist

Thursday October 6: Hematology

Monday October 10: New patient visit with Onco-fertility specialist OB/GYN. Since I am still of child-bearing age and the next most likely place of spread for my cancer is my ovaries, we are being referred to a reproductive endocrinologist who is also an OB/GYN specializing in the care of women with cancer.

Last minute appointment of unknown timing: Dr Metz, head of the NET team at Penn, to discuss next steps and treatment options for my care. We’ll get a call a day or two ahead of time asking us to come in when he has an opening.

We are so grateful to have all of these experts (all except my primary care doctor are at Penn) working together to monitor, treat and care for me. We have been extremely impressed by the communication between the different doctors and departments and are confident that we are receiving excellent care.

Right now we are learning to take it one day at a time as my symptoms and energy level vary quite a bit. It is good to be home, where I can rest, but I can also get dressed, go outside and join my children in a bouncy castle.

Puzzle Pieces

If you follow us on Facebook, you may have heard that I was readmitted to hospital again on Sunday, September 11.

There were a number of things that came together that led to my re-admission. I’ve had some concerning symptoms: bleeding, dizziness, pain and nausea. I’m also experiencing some heart concerns – low blood pressure, tachycardia, palpitations, and arrhythmia, and I’ve fallen a couple of times. I have a number of swollen lymph nodes throughout my body, and some unexplained gas bubbles in my abdomen, near the site of my anastomosis.

These are a diverse range of symptoms, with a few different possible causes and a number of teams are involved with treating me. I’ll give a brief update as to where we are at based on each team.

Continue reading “Puzzle Pieces”

The Next Battle

My body is fighting a war, good cells against bad cells. It is being fought on multiple fronts.

There is the cancer. We learned that when I had my second surgery in July (to repair the anastomosis that was bleeding) they removed another microscopic tumor. Too small for the surgeons to see. Too small for the pathologists to see. Only under the microscope, going through cell by cell, did they discover it. This confirms what we and the medical team suspected and assumed: We will be fighting this war for the rest of my life, as tiny tumors sneakily grow. This doesn’t change our management plan; we will still wait and watch, carefully. There is no chemotherapy for my situation. No remission for this kind of cancer. So we will be always at the ready, vigilant and aware, to do what we can to keep it at bay.

Continue reading “The Next Battle”