Tentative plan

For anyone who knows me, knows I love to have a good plan. A goal to work towards, something to prepare for and anticipate. For the moment, we have a line up of next appointments, procedures, scans and surgery date. We also know from previous experience that nothing is set in stone and one appointment is dependent on another and the results from the test before it.

Our current plan looks like this:

Kerry has a procedure on May 6 to look at the tumor site and tattoo it so that it can be seen easily on the outside of the colon wall when they go in to do surgery. Who knew you could tattoo a colon? I didn’t until this week and it doesn’t sound comfortable.

May 9 is his next CT scan. They will be scanning his chest, abdomen and pelvis. There was a spot on his lung they felt was benign on his initial scans but they want to be sure there haven’t been any changes. Our prayer is that this spot is gone or completely unchanged.

May 16 is the big surgery date. The surgeon is planning to remove the remaining part of the tumor, area around it and the surrounding lymph nodes. We are hoping this can be accomplished laproscopically because it will be an easier recovery for Kerry. The surgeon has told us that the lower in the colon/rectum the tumor, the harder it is to accomplish the surgery laproscopically. Kerry’s tumor is low and the surgeon has said if he needs to open Kerry up to gain better access he will.

The surgery will last several hours and we are hopeful that the surgeon will be able to get clear margins without going into the circular muscles around it. If he has to go into those muscles, the likelihood of a permanent colostomy goes up. We are praying they can remove the tumor and get clear margins without the need for a permanent colostomy. Kerry will likely stay in the hospital for 4-5 days and then be off work for several weeks during recovery.

We did learn this week that Kerry will have a temporary ileostomy after surgery (HERE is some good information about what that is). He will have the ileostomy for the months he is on clean up chemo and for about a month after he is done. Assuming all goes well he would have reversal surgery (putting everything back) in November or December of this year. It was pretty discouraging to be honest. We had hoped that he wouldn’t need one. Because radiated tissue doesn’t heal as well and to minimize the chance of complications, it is best to give the remaining bowel rest while it heals. The ileostomy means that when Kerry goes back to work he will likely be on light duty for several months and perhaps until the reversal is complete.

We continue to rejoice in the blessings and goodness of God through this. I have been keeping a journal of the notes, acts of kindness and how God has supernaturally provided for our family thus far. We’ve rejoiced as God has provided answers to prayers and met needs we didn’t know we had. We continue to cling to Him in times of uncertainty, in times when our plans change and when we hear discouraging news. We pray that God will be glorified and that we can be faithful witnesses to His goodness.

Ways that you can specifically pray in the coming weeks:

  • Pray for the surgeon and healthcare team that will be taking care of Kerry during his surgery and hospital stay. Specifically that the surgeon will be able to get clear margins without the need for a permanent colostomy.
  • Pray for Kerry’s upcoming scans. That they will be clear.
  • Pray for our family as we prepare for Kerry’s surgery and time off. That we will be good stewards of our time between now and then. Our children have been amazingly resilient and we’ve been very open with them about cancer, surgery and what to expect. Pray though, that we can spend our time well with them. That we can show them God’s goodness and our reason for hope in Him.
  • Continue to pray that we will be sensitive for opportunities to share the gospel with those we encounter along the way. We have hope and peace in what lies ahead because of what Christ has done for us. We know others don’t always understand or have this same hope but that we have been given a unique opportunity…pray we use it well.

As always, thank you. Thank you for praying with us and for us. May God be glorified in all we think, say and do.

Week 5 — One to go

The countdown is on. Kerry has 3 more days of radiation this week and Friday his chemo pump is off until after surgery. To say we are anxious for Friday is an understatement. Kerry has been experiencing some increasing side effects from the radiation the last couple of weeks. He had some pretty severe intestinal cramping. The radiation oncologist gave him some anti-spasm medication that seems to help if he stays on top of it. Unfortunately, it makes him a little dizzy if he stands up too fast.

Kerry is still working 4 days a week. He doesn’t work Monday because of the time it takes to draw lab and put the pump on and then radiation in the afternoon. The rest of the week he’s at work by 0600 and works until 1pm, then comes home to get Gabe and they go together to radiation. Gabe is getting lots of good practice driving and Kerry gets a little nap. He needs to rest most days and has definitely been feeling lots of fatigue over this last week.

We had an appointment with the medical oncologist this week. He has scheduled a CT scan in May and then we will meet with the surgeon to decide when surgery will be.

We have some things to celebrate this week with Gideon. On Tuesday he graduated from speech therapy! This is a huge accomplishment for him. A year ago only about 10-15% of his speech was understood by strangers and he wasn’t putting words together well. He was diagnosed at that time with Apraxia of speech that is likely related to his Noonan Syndrome/Neurofibromatosis. His speech therapist was wonderful and he made massive strides in his ability to express himself. We are so thankful! We will go back for a re-evaluation in a year to make sure he is still on track. On Thursday he had his yearly cardiology appointment for his heart murmur (also related to Noonan syndrome). His heart murmur is completely gone (a HUGE answer to prayer) and we now only have to follow up every couple of years to monitor his heart size as he grows. We are so thankful for the answered prayers we’ve had this week.

One other big praise for us was that the plumbing in the basement is done. Just before Christmas our sewer backed up (YUCK!) and we had to tear out the bedrooms, bathrooms, storage room and part of the walls. While we had the flooring up, we decided to replace the cast iron pipe in the old part of the house…all buried under the concrete floor of course. Then Kerry got cancer and everything got put on hold for a time. This week we had someone jackhammer the concrete out (super noisy) and the plumber came out to replace the pipe. Now we need to get some sand and poor concrete to patch the floor. Then we’ll be ready to start putting sheet rock up and flooring down. We are thankful for progress!

Overall, it was a good week. We are thankful for God’s provision for our family and meeting needs before we even know we have them. Even on hard days we have much to be thankful for.

Psalm 73:28: But as for me, the nearness of God is my good; I have made the Lord God my refuse, That I may tell of all Your works.


Week 2

Kerry just finished week 2 of chemo and radiation. Overall, it was a good week. The chemo really seems to affect his appetite and taste of food. Our biggest battle this week was finding something that sounded good to eat and getting him to eat it before it started sounding not so good. It’s tough to fight off nausea and keep food in your stomach when you don’t really want to eat anything at all.

We did find a couple of winners in the food category. Pizza always seems to sound good. Banana peppers…we also learned our boys also enjoy these. We’ve gone through more than a couple jars this week already! I made a vegan cauliflower/broccoli soup this last week that he was able to eat for more than one meal.

When Kerry was initially diagnosed we went to a mostly plant based diet without processed carbs or sugars. With his lack of appetite, there have been some days he’s just eaten whatever he could tolerate…plant based or not.

Radiation has gone well. Fatigue has been the biggest side effect there. The radiation oncologist said week 3 tends to be the week that things catch up with you. So we’re going into next week with a little trepidation, but also with the prayer that Kerry will continue to be minimally effected by the treatment and that he will continue to be able to work.

So prayer requests for this week:

  • That Kerry’s appetite would return.
  • Rest when he needs it and the wisdom to know when it’s time to take a break. Sometimes he pushes himself and then just drops at the end of the day.
  • Minimal side effects as we go through week 3 radiation.
  • Strength and stamina for the weeks ahead.

Week 1 Done

Kerry started his routine of chemo and radiation this week. Monday morning he had lab drawn and then we went to the infusion center. There he received steroids and anti-nausea meds before they started his chemo pump. He will be receiving the drug 5-FU. He then goes to radiation every afternoon at 2:30 in Wichita. His radiation takes around 15 minutes and then he’s on the way home.

This is the pump Kerry is connected to Monday-Friday. It delivers small amounts of medication over the course of the week.

So…how’d he do? Overall, ok. For the first time in his life he struggled with having an appetite. If he didn’t have food in his stomach he got nauseous but he didn’t want to eat anything. I told him “Sounds like morning sickness”. 🙂 The rest of the week we called it chemo morning sickness. After radiation he was mostly tired, but he was able to work every day this week from 6am to 1pm, then home and then to radiation at 2:30. They tell us the side effects of radiation really start to kick in around week 3 so we enjoy the good weeks while we can.

The biggest adjustment this week was being tethered to the pump. It’s amazing how short that 5ft tubing feels when you have to roll over in bed or shower with the pump hanging outside the curtain. Kerry does a lot of lifting and forklift/parts picker (please don’t ask me what that is) work at his job. Some of it requires him to wear a safety harness and lift above his head which was made more difficult this week. He said he wasn’t as fast as he usually is…and that was frustrating to him I think. We know that there may be a time in the coming weeks he won’t be able to work so for now, he is thankful he feels good enough to go.

Excited to be tether free this weekend!

He was looking forward to today though. This afternoon he got his pump off for the weekend. I think he was most excited about being able to hold the kids on his lap. When he is connected we have to be cognizant of the tubing, pump and port so snuggles have been limited this week. I wish I would have taken a picture with all the younger boys and Lily on his lap this evening. They were all happy (and crowded).

Today was also “Dress in Blue” day for colorectal cancer awareness month. I just have to say my work family and friends rocked it today! I loved seeing my Facebook feed full of pictures of you all wearing blue. I means so much to know that we have such a huge support system. We are ever grateful for the prayers and love we’ve been shown. If you missed it today, you can wear blue any time this month, post on social media with the #dressinblueday.

We are very blessed.

Better than I deserve

“And when you ask me how I’m doing, I’m going to tell you that I’m better than I deserve. Because it’s true. I was a sinner destined for hell and God saw fit to save me. So anything and everything He gives me, including this, is already better than I deserve.”

Those were the words my husband used two weeks ago when he told our church family that he had been diagnosed with colorectal cancer.

The previous Thursday he’d had a colonoscopy because of some vague GI symptoms. We didn’t expect to find anything really, but rather checking off a box on the way to another diagnosis…but instead his doctor found a tumor. The biopsy showed the tumor was cancerous and that it hadn’t been completely removed.

The last two weeks have been a whirlwind of appointments, body scans, more appointments and more scans. And lots and lots of prayer.

We meet with an oncologist this week to help determine next steps. The tumor location and growth pattern makes just removing part of his bowel a little tricky. Surgery is tentatively scheduled for Monday February 18 depending what the oncologist recommends. We are hoping that radiation or chemo won’t be necessary, but we are aware that’s a possibility.

While there has been a roller coaster of emotions, thoughts and “what if” scenarios. We rest in God’s sovereignty and that He knows the future and will see us through. There are times that we have been scared about what lies ahead and what a cancer diagnosis means for our family and life as we know it. However, we are at peace knowing that God, in His infinite wisdom has allowed our family to walk through this trial together. We trust that this is being used to refine us and shape us to be more Christlike.

We know that God is good regardless of the outcome and we have been given better than we deserve.