Parenting when Dad has cancer

The diagnosis

SK: What symptoms led Bruce to see a doctor?

Ana: His symptoms progressed quickly over the course of two days and sent him to the ER rather than our regular doctor. The symptoms themselves mimicked an inflamed gallbladder so well that we initially saw a general surgeon at the hospital who was planning on taking out his gallbladder that evening. After doing a CT scan, they realized it wasn’t his gallbladder at all.

SK: How long did it take to get diagnosed?

Ana: It wasn’t a quick diagnosis. They did a CT scan at the hospital during his stay after the ER trip, but didn’t know exactly what was going on. We ended up with a gastroenterologist who did several scopes. Two to look around and get biopsies and another when he became jaundiced. It wasn’t until they were placing a stent in his bile duct that they finally got malignant samples.

SK: What is the exact diagnosis?

Ana: His official diagnosis is Cholangiocarcinoma, but at first they thought it was pancreatic cancer. They have very similar symptoms if the tumor develops on the pancreas itself rather than up closer to or in the liver.

Treatment

SK: Describe what treatment Bruce has had over the course of his illness.

Ana: So far, he has had countless CT scans, three upper GI scopes, a Whipple procedure, six months of IV chemotherapy using cisplatin and gemcidabine with Neulasta post infusions, and is now in the middle of his six weeks of radiation with oral chemotherapy. Radiation and his oral medication, which is Xeloda, are daily Monday through Friday, with a break from both over the weekend.

SK: What side effects did he suffer?

Ana: He was chronically nauseous during IV chemotherapy, but the biggest side effect has actually been bone pain, particularly in his lower back.

SK: What have some of the challenges been during this time?

Ana: One of the biggest problems has been money. Bruce hasn’t worked full time at his job in a while now and hasn’t felt well enough for much time since the first symptoms. That makes it difficult for me to work as I am primarily caring for him and our son. Our county has half-day kindergarten and pretty much made it impossible to go back to work part-time. We have been extremely fortunate that Bruce’s family has been able to help us with money during this. Even with Bruce’s time off of work and reduced income, we still do not qualify for assistance through the state.

We also had our car break down unexpectedly in the middle of chemo treatments and had to jump through tons of hoops to be able to find a new one for us. Finding the car we have currently was another very lucky break for us. Last but not least was finding out that Bruce’s insurance didn’t fully cover his Xeloda prescription. Without insurance the drug is around $5,000 a month out of pocket. With our insurance coverage it knocked it down to $1,000 per month. Thankfully, the specialty pharmacy was able to help us with the remaining cost of the drug with their own financial hardship program.

Keeping it together

SK: How much does Kane know about Dad’s illness?

Ana: None of it has been hidden from him and he understands it as well as he can at his age. He knows that his dad is very sick and will need ongoing care to get better. Kane has been to almost every single doctor’s visit, procedure visit and when he did IV chemo, we all drove up together. It was a six-hour infusion and because we live over an hour’s drive with the crazy traffic in this area, Kane and I would spend the rest of the day near the city, so it was a bit of an event each time. He also knows that Bruce takes oral chemo and gets radiation during the week.

SK: Have you been able to get Kane involved in Bruce’s care at all?

Ana: Yep! Kane is fairly eager to please so he’s helped to get stuff if Bruce needs it for the most part. A lot of his care is just letting him rest. Kane helps with chores but it’s something he did before this happened, too.

SK: Has Bruce stayed a hands-on dad throughout this time?

Ana: Pretty much. There are some days when he’s just too tired, this is something that has been more with the radiation than the chemo, though. We still go to parks or take walks together. Bruce handles potty issues when those come up and watches Kane when he’s home so I can do things outside of the house on my own.

He’s also been as hands-on as possible with the rest of our lives as well. The only reason he’s not still on trash duty is because he’s developed a hernia post-op along the internal incision line and I do my best to keep him from lifting [when he shouldn’t be]. The hernia has been a huge annoyance for him as they have to wait about a month after radiation is finished before they can go in and repair it.

What the future holds

SK: What is Bruce’s prognosis at this time?

Ana: Bruce was lucky to be diagnosed at stage 2B for his cancer. It seems like an easy diagnosis but for pancreatic and bile duct cancers, 2B is the upper limit of what is still treatable. Beyond 2B they don’t usually consider the Whipple procedure to be a viable part of treatment. Currently, there has been no evidence of tumor regrowth on the pancreas, bile ducts or any other surrounding organs or tissue. His blood work shows that nothing is growing on a microscopic level, either. Bruce will be in treatment for the rest of his life in some form or another, but the big picture is very positive.

SK: What’s next for the Wilmot family?

Ana: For right now, we’re just waiting until Bruce is done with active treatment so we can regain some more normalcy. Our daily routines have been switched up quite a bit with all of this. With Kane starting kindergarten this year, it’s helped to sort of distract from the current situation some. We’re definitely looking forward to not having to plan our days, weeks and months around treatment.

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