A Rarity

The last day of February is called Rare Disease Day.  The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. 1 in 20 people will live with a rare disease at some point in their life (doesn’t seem so rare does it?). So why am I telling you this? Because 4 years ago one of our children was diagnosed with a rare genetic condition. We haven’t talked too much about it because honestly…at this age it’s very wait and see.

Our son Gideon was diagnosed with Noonan Syndrome-Neurofibromatosis 1 or NS-NF1. It’s actually characterized as Neurofibromatosis with manifestations of Noonan syndrome. I don’t know that it makes any difference what you call it. Even the scientists don’t know if it’s an overlap of these two conditions or if it’s a new disease entity itself…so if they don’t know then neither do I. Noonan syndrome occurs in 1:2500-3000 people. (February is also Noonan Syndrome awareness month). Interestingly, some people can have such mild symptoms they aren’t aware they have it until they have a child affected. In Gideon’s case it is a random mutation (meaning neither Kerry nor I have the condition). Since it’s an overlap of two different diseases, I’ll talk about each of the separately.

Noonan Syndrome a wide spectrum of symptoms and physical features that vary greatly in range and severity. There are lots of characteristics of this disease that do not appear to affect Gideon at this time. He has started to ‘grow into’ some of the physical characteristics that were a bit more prominent at birth. Noonan syndrome is characterized by short stature (he is average height for his age currently, but this may change as he gets older), specific heart defects (he was born with a heart defect, but he has been given the “all clear” and we only have periodic monitoring now). Many kids with Noonan syndrome blood clotting and platelet deficiencies (his were normal this last year, but had been abnormal previously), learning difficulties or mild intellectual disability. Noonan syndrome is an autosomal dominant genetic disorder (meaning if he has children they will have a 50% chance of getting the disease). You can read more about Noonan Syndrome here: https://rarediseases.org/rare-diseases/noonan-syndrome/ Please remember that kids can be affected very mildly or very severely by this disease. Thankfully, Gideon seems to be on the mild end of the spectrum.

Neurofibromatosis 1 is also know as Von Recklinghausen’s disease. This condition is characterized primarily by changes in skin color and the growth of (non-cancerous) tumors along the nerves of the skin, brain, and other parts of the body. The severity and specific features can vary greatly from person to person. Gideon has many more of the features of NF1 in that he has several cafe’ au lait (birthmark) spots on his body. We were at a well child check and the doctor asked Gideon to show her where is heart was. He promptly lifted up his shirt and pointed to his arm pit…where a heart shaped spot is. The biggest concern with NF is the formation of benign tumors under his skin. Children with NF often have tumor formation on their optic (eye) and ocular (ear) nerve pathways. Sometimes these can lead to vision or hearing loss. So far, Gideon does not seem to have any tumors but they typically occur during growth spurts and puberty so we will monitor more closely as that time approaches. Gideon also has what they call lisch nodules on his eyes. These are clumps of pigment on the colored part of his eye that do not affect vision. You can read more about NF here: https://rarediseases.org/rare-diseases/neurofibromatosis-type-1-nf1/

The management for both is symptomatic and supportive. So that’s what we do. For now, we really just treat him like a normal kid with a little closer monitoring. He sees a pediatric dematologist, cardiologist, hematologist/oncologist and opthamologist on a yearly basis. We take a little trip to Kansas City and see all of them in one fell swoop. His appointments thus far have been relatively normal and low key. His heart murmur caused by the defect is almost non-existent and this last year we were told we didn’t have to follow up for 5 years. His blood clotting studies were within normal limits this last check so we don’t have to check again for another couple years. We will see the dermatologist and opthamologist yearly forever. He did go to speech therapy for something call Apraxia of speech (which may or may not be related) last year and will be re-evaluated again this year to determine if he should resume that. We were warned learning may be a challenge for him. Our pediatrician told us he’s the best environment possible to support his learning and education…a house full of siblings who are learning alongside him and an environment where he can be taught how he needs to be.

We’ve known about Gideon’s diagnosis for several years but haven’t shared much about it. Part of that is because quite honestly…we’re not big drama people and didn’t want it to change how others treated him. We still don’t want others to treat him differently. So why share now? It just feels like a good time. I’ve had a couple people recently comment about his physical appearance and how he looks “different” from the rest of our family (we think he looks perfect of course) and also as Gideon gets older we want to be sure we are open with him about his diagnosis. Right now, he really has no idea other than he gets to go to Kansas City every year. We will need to have very frank conversations with him when he is able to understand about the likelihood of passing this condition to his children and just because his symptoms seem less severe his children would not be promised the same outcome. We also share because as he grows the likelihood tumors will develop increases. This can affect physical appearance, cause pain when they compress on nerves and impair his sight or hearing.

We know that God knit Gideon together before he was born and have never doubted the gift that he is to our family. He has an amazing personality and sense of humor. He loves his siblings and babies (ours and everyone else’s) immensely. If I could bottle his laugh I would. We pray that God will protect his vision and hearing, but trust that if these are affected God will provide us with what we need to face that challenge.

So this month raise your awareness about rare diseases. Hug someone affected by one and celebrate their uniqueness!

One Year Ago

A year ago today we sat in our doctor’s office and heard “You have cancer” for the first time. The day before Kerry had a colonoscopy due to some vague symptoms. We went into that scope expecting not to find anything and left knowing they’d found a tumor and it was quite possibly cancer. Our doctor advocated for us and biopsy results were expedited and we had results the next day. Those words started a crazy 2019. It was full of appointments, treatment, surgery and lessons in flexibility. We started his cancer journey that chemo and radiation wouldn’t be needed, that he’d skate by with “just” surgery and no ostomy. Instead…he went through chemo, radiation, bowel resection and ostomy, chemo again and then his reconnect surgery this last November.

Here we are on the other side of treatment. Kerry has scans and labs every 3 months to monitor progress. He had his first post-treatment scan on January 2 and it was clear. His white count is still very low but thankfully he has been able to stay well and not get sick. I’ll tell you though…scanxiety (anxiety leading up to scans) is totally a thing. Kerry seems to take it all in stride but it was tough for me not to be anxious.

Overall, Kerry is feeling better. He is still discovering what he can and can’t eat after his ostomy take-down and resection. Foods that he used to enjoy can really cause some discomfort so he makes diet modifications where he can. Some veggies, fruit and dairy seem to cause the most trouble. Right now we are focusing on cutting out as much sugar as possible, eating whole grains instead of empty carbs and eating the fruits/veggies he can tolerate. He will have another colonoscopy in the next month or so and his next scan is scheduled for April.

So as we start 2020 we look back on our journey and thank God for the blessings He provided during a difficult year. We continue to trust Him for what the future holds and know that He will sustain us regardless of what lies ahead. Thank you to those who have prayed for our family and cared for us over the past year. God ministered to our family through you and we are forever grateful. Thank you for continuing to pray for us in the coming months and year ahead.

Our friend NED

Today we had a follow up with Dr. Mattar. It was to get the results from Kerry’s last CT scan, lab results and determine what the next steps are. As usual, the office was very busy and we had a while to wait.

Dr. Mattar reviewed the CT scan results. His CT scan was clear except for the lung spot we’ve been watching all along. There has been no change since the very beginning and it appears to be a benign granuloma at this point. This is excellent news!

Labs looked okay. His white count is a little low, but chemo was last week so that’s to be expected. Kerry will have labs again next week and then if all is stable, they will be drawn every 3 months along with another CT scan.

Then came the best words “You have No Evidence of Disease”. Woot! In the cancer world that’s called NED. We’ve been told they don’t use the word remission or cancer free as often as they used to, but rather tell patients you have no evidence of disease. We’ll take it however you say it. Whew! Big exhale after what feels like a lot of breath holding for the last months and weeks.

The very next question from Kerry was “when do I get to see the surgeon for my ostomy reversal?” I can’t say that I blame him. Dr. Mattar said 5-6 weeks post chemo is usually when he would be able to have surgery. Kerry told him he’d like to have it done before Thanksgiving. Dr. Mattar texted his surgeon while he was still in the room and said “He needs no further chemo and should be stable to have surgery before Thanksgiving”. Honestly, I’m surprised Kerry didn’t call the surgeon from the waiting room. We’ll give it a week or so.

While we are elated, we are also a little sad. Sad for our friends we made in chemo that aren’t done yet. Who are still going and sitting in those grey chairs each week getting infused. We are sad for our friends who will never get to NED and those who have and will die in the fight. We also know that we’re not out of the woods yet. We know that it can come back and that we will never leave the “in between” scans/labs/appointments. We are grateful for a God that provides for us in those in betweens. We are thankful for the friends we’ve made and the nurses who cared for us during treatment.

We are thrilled at the prospect of putting it all behind us, while keeping the One who guided, provided and sustained in front of us all the time. We have been given a unique opportunity and pray that we can be faithful while we rejoice and wait for the next step. We have learned much and are grateful that God has used this experience to continue to shape us and our family to be more Christlike.

Thank you to those who have prayed for us and our children. Who have encouraged us with cards, prayers, notes, texts and hugs. We thank you for continuing to pray that Kerry’s scans and labs remain clear. We also pray that he will be able to have his ostomy reversal before Thanksgiving and that it will be uncomplicated.

We are blessed in the midst of trial, in the celebration of the news today and in whatever lies ahead. We are blessed because we serve a Holy God and our hope lies not in treatment, but in Him.

Psalm 33: 20-22

Our soul waits for the LORD; He is our help and our shield. For our heart is glad in Him, because we trust in His holy name. Let your steadfast love, O LORD, be upon us, even as we hope in you.

The in-between

I guess it’s been a while since I’ve updated about Kerry and our family. Mostly because we’re just trying to get through the weeks and counting down until his last infusion (one more to go!). We are living in the in-between. In-between surgeries, chemo, labs and scans. So here is our update of life in-between…

Our in-betweens are marked by chemo infusions and the week after. Kerry goes every other Wednesday for his chemo and wears a chemo pump for the two days after the initial 3 hour infusion.

As the infusions have gone on, Kerry has experienced the ‘cumulative’ effects of chemo. Basically, it means the side effects add up and get worse each infusion week. He struggles most with nausea, extreme fatigue, change in taste and cold sensitivity in the week or so after his infusions. The fatigue has been severe enough that he’s only been able to work half days for the few days after infusion and the days he is able to stay at work all day he comes home completely exhausted. We are grateful his work has been willing to work with him and has been understanding.

One of the challenges during these warm weeks has been trying to keep cool enough at work. Due to his cold sensitivity Kerry is unable to drink anything cooler than room temperature water for 5-7 days after infusion. When he does, it makes his throat feel like he’s swallowing rocks or closing up. We did try something new the last couple of times that seems to help. He drinks or eats a slush throughout the infusion (2-3 hours) and it seems to lessen the intensity and length of the cold sensitivity.

After the last few infusions he has developed some neuropathy in his fingers. They tell us that the neuropathy may continue to worsen in the months following chemo, but for now, the effects don’t last beyond several days after chemo. He’s taking several supplements and doing exercises to help with neuroprotection and hopefully limit any long-term damage. We’ve been told that anything that lasts longer than 72 hours after chemo is considered permanent.

On our ‘in-between’ weeks when he is feeling well, we have tried to enjoy the little moments and time we have together as a family. We celebrated Lily’s first birthday in August and were able to enjoy a quick trip to Colorado over Labor day weekend. It was an off week for him so we took advantage of the long weekend and saw some dear friends and church family in Pueblo on the way to visit my grandparents in the mountains of Westcliffe. A week ago, we both took a day off and we took our family to the state fair. We went mostly for the food. 🙂

We’ve learned to plan projects and family events for in-between weeks too. It’s made things a little tougher because we have half as much time to get things done as we used to. We’ve seen the older boys really step up to help to make sure things get done or at least maintained on the weeks Kerry is down with chemo. Gabe has been working part time and taking college classes part time. Otto and Zeke have both really worked hard at home to help out and I am so thankful for them. The younger boys have had to make adjustments and thankfully they’ve been flexible with whatever has been thrown at them.

We’ve learned a lot over the past several months of treatments. We’ve met some wonderful people in chemo, patients and nurses. I told Kerry we should write a book “The people you meet in chemo” and tell the stories of the people and the families we see every week. If we had more time maybe… We’ve learned the importance of using every moment for purpose. Even our down time and rests take on a new meaning and priority. God has used our in-between to make us grateful for the health and time we’ve been given. He’s given new urgency to the relationships we have within our family and with others.

We are grateful that Kerry has completed 7 of 8 treatments. Some ways you can pray for us in the coming weeks:

Kerry has a CT scan on Oct 1. Pray that all continues to be clear. His last chemo infusion is planned for Oct. 2. Pray that his side effects are manageable and that he has no lasting neuropathy…this is our biggest concern. We will meet with his oncologist again on Oct 10. We are hopeful that after this appointment he will be given the all clear to see the surgeon and start moving towards reconnect surgery in 4-6 weeks after the infusion. The ileostomy has been the biggest and worst adjustment for Kerry to make. He is ready to be done with the ostomy and we are hoping it can be reversed before Thanksgiving. He did have a blood clot shortly after his resection, so the fact that he’s on anticoagulants will complicate the reconnect surgery. Please pray the reconnect can happen before Thanksgiving and it will go smoothly.

Thank you for praying for us as we live in-between.

What you don’t see…

“Oh! He looks so good!” It’s one of the first things people say when they see Kerry. Mostly because the mind immediately expects someone on chemo to be bald, emaciated and wasting away. So far…we’re not there yet. He does look good, especially on his off weeks.

But what you don’t see is how utterly exhausted this chemo makes him. On infusion weeks, day 3 and 4 are the hardest after chemo. He’s so tired and he sleeps a lot.

What you don’t see is the complete lack of appetite, ruined taste buds and 15 pounds he’s lost in the last couple of months. He salts his food like he’s making it snow. Seriously…it looks terrible, but he says he can barely taste it. (He’s low on sodium anyway because of the ileostomy, so the extra is really ok). It’s difficult to find foods that sound good to him…it’s like morning sickness except worse. The week of infusion he gets 2 nausea meds and then takes others around the clock for 3-4 days to keep the edge off.

You don’t see the stress of planning stoma changes, emptying the ileostomy bag or life revolving around scans, appointments and what ifs. Having an ostomy takes it’s toll emotionally and physically. It’s easy to become weary and discouraged. It’s easy to be anxious about the next round of weekly lab results, scans every 3 months or oncology appointment.

Do you know what else you don’t see?

You don’t see the incredible ways we’ve been blessed. We have so much to be thankful for! You don’t see the little moments of encouragement we’ve had. I can’t tell you how many times when I’ve been anxious or down about our journey, I’ll get a random text or message from a friend letting me know they’re praying for us. Or someone will post a picture in their Pray Kerry Kicks Cancer shirt and I’m reminded that we are cared for.

You don’t see the ways God has provided for us. We’ve been so loved on by others. It’s been a balm to us in difficult times. I’ve been keeping a box with cards and notes, but also writing down stories of how God provided for us financially, emotionally and spiritually. One of my favorites, is from early on when Kerry was in radiation still. It was a Saturday and we’d just got a big radiation bill the day before. We were trying to figure out how to arrange our budget to be able to pay it. The FedEx man was here and I was on the sidewalk trying to keep the dogs from jumping in his truck and a young gal drove up on our driveway. She got out of the car and said “You don’t know me, and that’s okay, but I have something for you. We’re praying for you. ” She gave me an envelope and got back in her car and drove off. I thought it must be a neighbor with our mail or something. I didn’t recognize the woman at all. When I got inside and opened the envelope, it was a gift that allowed us to pay our radiation bill we’d received the day before plus some. It brought tears to my eyes and I was incredibly humbled by the generosity of others. We still aren’t sure who she was or where the gift came from, but we are ever grateful for the blessing and provision of God.

You don’t see the nights we’ve sat around our table exhausted from the day’s appointments and treatment to enjoy a meal that someone else provided. We’ve thanked God over and over again for the generosity and the hands that lovingly fed our family along the way.

There are lots of things you can’t see on this journey. It’s easy to dwell on the negatives and worries. One thing we’ve learned is that looking at all we have to be grateful for, helps bring what really matters into focus. We are often reminded of God’s goodness even in difficult times. We are reminded of His merciful love for us and the assurance that we are not alone on this walk. Thank you to those who have prayed for us, encouraged us and cared for us in ways others can’t always see, but we’ve felt deeply. The Lord has blessed us through you.

If I Ever Get Cancer

I’ve decided that imagining what you’ll do when/if you or a loved one gets cancer is a lot like imagining what you’ll be like as a parent before you have kids. You’re pretty sure you have it all figured out until it happens and then you realize you know nothing.

That’s how this has been for us. Before Kerry was diagnosed we would sometimes talk about “If I ever get cancer…” and about how we’d approach treatment and appointments. We thought we had it figured out. We were sure neither of us would ever have chemo or radiation. We reasoned, if cancer is caused by cells that are overgrowing and not able to be regulated by the immune system, then you “beef up” the immune system and it will be able to conquer the cancer right? Build up the troops so to speak and the troops will win the war.

We read books, watched documentaries and research lots before we decided to go with traditional treatment along with some complementary treatments. So what is it that made us decide to ‘poison’ his body with chemo and radiation? Honestly…it’s what we felt the most peace with. We prayed a lot for wisdom and discernment.

When we researched and talked to other care providers, we couldn’t find a single one who was willing to operate and take the tumor out without chemo and radiation first. Not one. We found ones that would support us through chemo and radiation with complementary therapies. We found ones who told us alternative treatments were junk and it was asking for a death sentence and we found ones that were more middle ground.

I’m a pretty crunchy person and I am a nurse. I’ve had most of my babies at home. I use a lot of complementary and alternative methods for ailments. Yet….my kids also go to the doctor, get most of their vaccines and vitamin K at birth I just heard my crunchy friends gasp.

I know there is merit to both approaches to health. I believe it’s vital to fuel your body with nutrients, vitamins and non-crap food. I also know that there is value in western medicine, antibiotics and traditional approaches to care.

We made the choice that we could live with and that felt the best at the time. We have re-evaluated at each step if this was still the path we wanted to be on.

We asked LOTS of questions of our oncologists. In fact, the medical oncologist we see jokes with us about our ‘question notebook’ and Kerry’s cancer folder that contains all of his meds, appointments, procedures and lab values. Complete with color coded, labeled tabs…all chronologically in order of course. We’ve been up front with Kerry’s doctors about our desire to incorporate complementary therapies in with his chemo and radiation. And our oncologist is okay with that. He’s been blunt with us about not throwing out the baby with the bathwater and encourages us to still use the traditional approach. He has shared studies and is willing to look at the ones we’ve brought to the table.

So earlier this year, every week Kerry would go to get his chemo pump and every day he went to radiation. I fed him fruits and veggies and vitamins to ‘beef up the troops’.

Tomorrow, he goes again for chemo. We will again incorporate the complementary therapies we’ve carefully researched. I’ll try to give him as much healthy fuel and supplements he can handle. Ultimately, we put all of our trust, not in the supplements and therapy, but in God. We pray for His will to be accomplished in it all.

Together we pray for God’s healing hand in it all. We trust that regardless of the outcome or therapy we choose, God will be glorified in the life we live. He is our healer, our protector and the reason we have any hope at all.

Romans 15:13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.

Blood clots, back to work and Chemo round #2

It’s been a busy few weeks. At Kerry’s 10 day post op appointment with the surgeon he casually mentioned some lower leg pain he’d been having. The blood vessel in his left lower leg was a bit swollen, sore and hard to the touch. His surgeon felt like it was probably just an inflamed blood vessel, but ordered a ultrasound of his leg just as a precaution. The ultrasound revealed a blood clot behind Kerry’s RIGHT knee and inflammation and irritation in his lower left leg. We promptly got a prescription for a fancy new (and very expensive) anticoagulant drug called Xarelto.

We saw his primary doc the next day. I’m just going to say…we are so thankful for Dr. Holdeman. He was the one who listened to Kerry’s complaints early on and ordered the colonoscopy even thought Kerry didn’t “fit the profile”. His proactive approach allowed an early diagnosis for us. Dr. Holdeman had already talked to our surgeon and oncologist (who was on vacation in the Middle East) by the time we had our appointment. Kerry will continue on the Xarelto for at least the next 6 months. Having cancer and treatment can increase your risk for DVT (deep vein thrombosis) and Kerry has had a DVT previously when he fractured his knee. The anticoagulant adds a layer of complication further down the road when it’s time for his reconnect surgery, but that’s a bridge we’ll cross when we get there.

The cool thing about Xarelto is that there are no lab values to be checked. When he had his DVT previously, he was getting injections in his abdomen twice a day and then having daily lab draws while we got to therapeutic levels. This time it is as easy as taking a pill twice a day and living life. We’re thankful it’s one less thing to track and so far it seems to be working well without major side effects.

Another milestone for Kerry this week was going back to work. He started back partial days on Monday and has been gradually increasing his time each day. He’s still on weight restriction for the next several weeks but he said it’s felt good to be back, even on light duty.

Next week clean up chemo starts. We’ve debated a lot about whether he should even do it or if we should delay the chemo until after they reconnect his ostomy. The thought of a chemo pump and the ileostomy can be a bit daunting and wearing on you. And quite frankly…Kerry is more than ready to be done with the ostomy. It inhibits his movement and ability to do his job and just life in general. We have yet to find the right products, “method” of taping or whatever to help make him feel like he can do normal activities. So adding chemo on top of that is not something he’s super thrilled about. However, we’ve talked a lot with our doctors and have been doing research on our own. For now, the plan is clean up chemo first and then the ileosotmy take down after that. We are hoping by Thanksgiving to have everything reconnected.

Even in light of the ostomy and the blood clots we have so much to be thankful for. God has been gracious to us. He is using this time to refine us and bring about change within our lives to shape us to be more like Christ. We are learning lessons of humbleness, kindness, patience, tolerance, compassion and so many more.

Some ways you can pray for us as we prepare for the next steps:

  • Pray that we can be a light to others in the face of adversity and uncertainty. We have been given a rare opportunity, pray that we use it wisely.
  • Pray for Kerry as he learns to live life with his ostomy. It’s a challenge.
  • Pray for minimal side effects from the chemo. This next round has the reputation for being particularly brutal. Pray that God would protect his fingers and toes from neuropathy and the rest of his body from cold sensitivity.
  • Pray for our children. It’s stressful for them too. Pray that they will see God’s faithfulness in trial. Pray that we will guide them and disciple them to see Jesus. Pray for those that don’t yet know Christ as their Savior. That they would come to a saving faith.
  • Pray for our docs, nurses and other care providers. We are thankful for them. Pray that they will have times of rest, for wisdom and grace with their patients. Pray also for their families. We know there is much sacrifice when they are caring for others.

Thank you all for the prayers. Our family has been so blessed by each note, text or word of encouragement.

Psalm 86:12 I will give thanks to You, O Lord my God, with all my heart,
And will glorify Your name forever.

The other side

Here we are, on the other side of Kerry’s surgery. We are learning a new normal for our family.

His surgery went well overall. It was longer than expected and let me tell you…as the one in the waiting room…it felt like eternity. I had been calm and collected leading up to the surgery until that morning when we pulled out of our driveway. It gravity of the surgery became heavier than it had been previously.

I was so thankful for my friends working in the OR and taking care of Kerry. It was easier to see him wheeled out knowing who was caring for him. The surgery itself took about 6 hours and was a bit more complicated than the surgeon initially expected. He said it was the lowest anterior (front) resection (removing) they’ve ever done. The doctor said he felt like we made the right decision to go ahead with surgery because of how the tumor had grown and that it was through the wall of the colon when he removed it. Kerry spent the first couple of days in ICU for closer monitoring and came home on Sunday this last week.

He is finding a new normal with the ileostomy (lay terms=poop bag). We have to be careful of the foods he eats, especially here at first, to keep from causing a blockage. It’s a mental adjustment for him too. There are things that you just don’t think of until you have an ostomy. The plan is that he will have this temporarily while his colon heals from the surgery and while he does clean up chemo. The goal will then be to “reconnect” again in 6-8 months (hopefully before then end of 2019).

He had 19 lymph nodes and removed bowel section were sent to pathology. We met with our oncologist yesterday. He was happy (and very shocked) to report that all 19 lymph nodes were clear and that it looks like the entirety of the tumor was removed with surgery. To say we were elated would be an understatement. The oncologist said more than once he was surprised at the response to the chemo and radiation. He still recommends clean up chemo for 4 months (probably starting in July) because the tumor was through the bowel wall and the risk of spreading was still there.

Kerry’s journey is far from over and we have a hill to climb yet, but for now, we take a breath and thank God for wonderful friends and miraculous answered prayers.

Psalm 5:11 English Standard Version (ESV)

11 But let all who take refuge in you rejoice;
    let them ever sing for joy,
and spread your protection over them,
    that those who love your name may exult in you.

Surgery tomorrow

Here we sit on the eve of Kerry’s surgery. Thankful for all those praying for us tonight. Early last week Kerry had a procedure to view and mark the tumor site. He also had a CT scan to make sure that there were no new tumors in his chest, abdomen and pelvis. A huge praise that everything looks stable and no tumors were seen. The spot on his lung was unchanged, this is excellent news!

His white and neutrophil counts had been pretty low the last couple of weeks. The big concern here would be infection and slow healing. His lab draw this week showed those values increased…another answer to prayer!

So all of this means surgery is a go for tomorrow. He’s spent the day doing ALL the things needed to prep a gut for surgery. You can imagine just how pleasant that has been. He’s kind of a pro at the bowel prep stuff so he has been able to avoid the wretched headache from dehydration this time.

He will check in tomorrow at 11:30 for surgery to begin at 1:30pm. The surgeon told us to anticipate 4 1/2- 5 hours for surgery. The hope is that the surgeon will be able to complete everything laproscopically. The surgeon did say that his tumor is about as low as possible for it to be able to be done with the laproscope, so if he doesn’t feel like he will be able to do as good of a job with the robot as he could do with his hands, then he will open Kerry up to get a better angle and access. We are obviously hoping that robot assist laproscopic surgery will be possible as it means an easier recovery time for Kerry.

Kerry will have an ileostomy as part of his surgery. When tissue has been radiated, it takes longer and can be more difficult to heal. He will have the ileostomy while he is on clean up chemo and for a couple of months after before they will attempt a reversal. This gives the colon the maximum amount of time to heal. Assuming all goes as planned (and honestly what does?) we anticipate reversal surgery in late fall or so.

We anticipate a hospital stay through the weekend or so and then home Sunday or Monday assuming all goes well. We have been so very well cared for by the nurses and doctors caring for him. We are thankful for their kindness and compassion. I am grateful that some of nurses scrubbing in tomorrow are friends and people I used to work with when I was on the floor. It makes my heart rest a bit easier knowing who is keeping an eye on him tomorrow.

Tonight as we go to bed, we are praying for those nurses and doctors in charge of Kerry tomorrow. We pray for skillful hands, wisdom and no complications. We pray for no complications, a smooth recovery and that there will be no evidence of cancer cells anywhere else in his body. We also pray for grandparents who are helping take care of the kiddos so that I can be with Kerry while he is in surgery and the hospital.

Though we may be a bit anxious for tomorrow, we know that God is in control. He knows the outcome of all of this and we pray that He will be glorified in all things. May we be faithful to share the HOPE we have with all those we meet on this journey. God is good and we are blessed.

Psalm 56:10-11

In God, whose word I praise. In the Lord, whose word I praise. In God I have put my trust, I shall not be afraid.

This month

This month is a big one. It’s hard not to approach with a bit of trepidation. We’ve been enjoying the last few weeks. Kerry has felt “almost normal” and we’ve enjoyed life not revolving around appointments, chemo and radiation. It’s been a sweet spot for all of us. So as we head into tomorrow and the weeks ahead, we take a collective deep breath, pray continually and take the next step together.

Tomorrow (5/6) Kerry has a procedure to mark his tumor site so that it will be easily visible when they do surgery laproscopically later this month. The procedure is outpatient and should be relatively straightforward. It can be likened to a tattoo on the inside of colon (sounds comfortable huh). It will allow the tumor site to be seen from the outside of the colon (intestine) in the abdomen. It will make surgery easier in a couple weeks. Our ‘wildest dreams’ prayer is that the site looks normal and they cancel the whole surgery because they can’t find evidence of the tumor ever existing. If that’s not the case, we know that God is still good and He will carry us through the what lies ahead.

Thursday (5/9) he has a repeat CT scan of his chest, abdomen and pelvis. This is to check on the spot in his lungs (they felt it was benign previously) and ensure there are no new tumors since his last scan in January.

Kerry has been having weekly labs drawn and the last couple of weeks his white blood cell count has been low. Normal is 4.5-6 and Kerry’s have been between 2 and 2.5 the last two weeks. His neutrophils are still on the low end of normal but not low enough for the oncologist to be concerned yet. As a nurse though, I know that the lower his white count is, it increases the risk of infection, illness and lengthens healing time. We are praying that his white count comes up over the next week or two before surgery.

Surgery is tentatively scheduled for Thursday May 16. Honestly, I’ve struggled with anxiety thinking of the extensiveness of this surgery, the recovery and watching my husband go through it all. I have been leaning heavy on a scripture I memorized when we were walking through the loss of Knox and our first daughter Lily Faith. I still have the note card I wrote this verse on and tucked into my apron pocket to pull out when worry and fear would overcome me. Tomorrow and in the weeks that come that notecard will be tucked into my pocket again.

Philippians 4:6-7 English Standard Version (ESV)

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

I am so thankful that I have the assurance of God’s peace and calm when I am worried. God loves Kerry more than I do. He sees the big picture and I trust that God, in His sovereignty, will do what is best for us. I know that regardless of what lies ahead…He is with us and will see us through to the other side.