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.

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”

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.

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.

Sitting in the hard

There are days when this is really hard.

Pretty much everyday there is at least one moment when this is really hard.

Cancer sucks. Incurable, chronic, stage IV, ultimately terminal cancer…it’s hardly fathomable sometimes, so hard to wrap our heads around. It steals my energy and my strength, my independence and my abilities. It’s an ugly, awful hard. Continue reading “Sitting in the hard”

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.

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”

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”