Today I told my child that she might have cancer

IMG_4002
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.

Advertisements

Some hard news about Eleanor’s health

Version 2
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.

Hormones, Hair Loss and Halloween

img_0580-1

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!

d3ea2f7e-5e85-420c-814a-16c95092421685e71963-5f48-4fd1-b0cf-6323172500e9

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!

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”

What Cancer Has Cost

Cancer has cost me.

My appendix, my ascending colon and half of my transverse colon, a portion of my small intestine. My gall bladder. My entire blood volume. My hair, though not all of it, cut to make it manageable, and falling out as the cancer takes its toll on my body. My curves, my body’s reserves, every last store of fat, iron, calcium, pound after pound until I hardly recognize my skeletal frame. Continue reading “What Cancer Has Cost”

Ongoing Recovery and Setbacks

My recovery from surgery has been marked by complications, slow progress, and some steps back as we move forward. Yesterday was a month since my surgery (the first one). This morning we are going back to the hospital with ongoing complications. We’re not sure what we’re dealing with and won’t know until we get some tests done and try to figure things out; however, we have a great team and are confident in their care.

We don’t know what today holds for us. We appreciate your prayers and we are grateful for your love, kindness and support.

Four years and a promise

Four years ago, Coleman took my hands, looked me in the eyes and promised to love me forever. He asked me to marry him, and I said yes, and he slipped a ring on my finger.

Today, he promised again to love me forever, and he slipped my wedding band and engagement ring back on my finger, the swelling in my hand finally come down, and my rings able to fit.

Coleman has upheld his promise, every day, through wonderful moments and terrible ones. These last weeks have been incredibly hard, harder than either of us imagined or were prepared for. He has cared for me through my suffering and suffered alongside me – in many ways I can barely imagine his suffering and think it might be greater. Watching the ones you love suffer is hard. 

The promise to love forever is a romantic one, made on a moonlight night in a beautiful garden. And it is made again and again in daily moments, as he changes my dressings and helps me dress, as he feeds me, and holds the bucket when I throw up, as he holds me steady to and from the car, back and forth to the hospital again and again and learns to drive my wheelchair, pushing through halls that have healed us and left us traumatized at the same time. It is chosen again and again when he gets up in the night to help me to the bathroom, when he brushes back my hair and washes my face, when he held my hands and prayed and prayed during long hospital nights, and as he whispered to me that it was okay to let go, that we all have limits, and having reached mine, it was okay to let go, and let Jesus carry me, through the suffering, or home to heaven, I could let go and rest in His arms.

It is a love that has sustained me and strengthened me in these last weeks and days. Yesterday, we returned to the hospital, and the last weight, the last anchor tethering me to the trauma endured in an effort to hold cancer at bay, a catheter drain, a tube inserted through my pelvis into my abdomen to drain out infected fluid built up post surgery, was finally, FINALLY, removed, and I wept for joy to have this chapter comes to a close.

It feels fitting then that this new chapter, this new day is an anniversary, a reminder of another new chapter we once started.

The promise to love forever is not a light one. It is heavy, a daily choice weighing on our hearts, burdening us to love the other, first, well, as God loves us.

And that’s the miracle. He loves me as Jesus does. The love of God is made real and tangible to me in the love of my husband; as Coleman chooses daily to love me, I feel Jesus come close. 

Three and a half years ago, Rev. Brad Heinrichs placed his hands on our heads as he blessed us during our wedding, as we were made husband and wife. That blessing and benediction is what I feel in Coleman’s daily love for me. The Lord’s hands on our heads, blessing us as we choose to live out the promise we made first four years ago: to love each other forever.

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.