New Normal

It’s been a while since we’ve updated the vast majority of people who have been such an amazing support and group of prayer warriors.  Without further ado, here’s what our daily lives have looked like.  After I made it out of the hospital (Big yay!), we were able to find a nanny to help us around the house from mid March to mid April.  By that time I was able to lift my babies, do housework, and act like life was mostly back to normal.  Your generous donations enabled us to hire her and help our family out.

Since chemo started, life has worked itself into a new schedule.  Non chemo weeks are great - I feel mostly normal and life looks very much like it did before we knew about the cancer.  Chemo weeks are rougher.  Our moms have been amazing.  They handle the kids on the week of chemo and leave me to rest through it.  Currently I am receiving the third treatment - the dose will be finished at 3pm today.  The biggest complaints are nausea, fatigue, numbness, tingling of fingers and toes, and an inability to tolerate anything cold.  These symptoms last until Friday or Saturday and then begin to taper off.  It’s a strange time of life, but we are grateful for an excellent oncologist and staff at MDA, and for really good medical care.  

When we met with our oncologist on Tuesday, he greeted us with good news regarding more pathology results.  Without going into medical jargon that I barely understood, the results are as follows:

1.  The cancer is bad luck — not environmental, and they’re 95% certain that it’s not genetic.  From this we may also conclude that children are not likely to deal with this.

2.  The cancer was growing at 50% which is an ideal number for they type and dose of the current chemo plan.  In short, if the cancer is growing too slowly, the chemo won’t find it as easily, and if it’s growing too fast, it may not kill it fast enough.  50% is literally the best possible outcome. 

3.  I am immunopositive for CDX2 - good marker of mature colon lining.   5 year survival rates are much, much higher if a person is immunopositive.  The results of this study just came out in January!  

We left that meeting with our spirits high.  

The meals have been amazing, and they will continue to serve us the remainder of chemo.  I don’t know if I mentioned this or not, but at the beginning of the year, David and I discuss our goals for our marriage, kids, etc.  One thing that both of us felt called to was hospitality to our friends and neighbors.  Oh, the irony!   The jokes on us.  We have been so blessed by your hospitality, your concern, your care, and your prayers.  

Speaking of prayers, I am humbled and honored to be praying for you, your loved ones, and your intentions.  Since the start of chemo, I have been asked to pray for a huge variety of requests.  On chemo days, I get blood work, see the doctor and staff, then finally go to the infusion room (it is an all-day affair).  When David and I are seated in the infusion room, and we have a few minutes to ourselves, we turn our attention to your needs and prayers.  We begin by saying this prayer:

O my God, We thank you for this cross you have allowed us to carry.  Please give us the strength and faith to persevere so that we may bring glory to your name while withstanding the burden of its weight.  Thank you for offering us a share in your suffering. We know that you have always been, are now, and ever will be, at our side every step of the way.  Thank you also for every “Simon” that you have sent to help us bear this cross.  We have prayed so often that this thorn in our flesh would be removed, but we trust that your grace is sufficient.  Change our hearts troubled cry of “How long, O Lord?” into words of trust “However long, O Lord”.  May we seek only to do your will and to unite our sufferings with your passion.  Help us to not get lost in our own self concerns, but may we find in these trials a way to greater virtue, a call to prayer, and a path to trust in you alone.  Permit us not to waste our pain, but to make of these struggles a sacrificial offering for others.  Lord, when we are weary and we fall, exhausted under the weight of this cross, please give us the courage to press on as you did.  Lord Jesus, we embrace with love our cross, as a share in your own.  By your grace, may we carry it all the way to the vision of your glory.  We abandon ourselves totally to your will.  Christ Jesus, we trust in you.  Amen.

I randomly found that on a prayer card at my parents house when I was writing down many of your intentions.  After we say it, then we pray for each of you by name.  One thing that has been remarkable for me to hear is how you have shared with me when a prayer request has been “fulfilled.”  To see your joy in the midst of your own struggles has been a real light to me.  I love that I am able to offer prayers of thanksgiving to what was a prior prayer of petition - jobs acquired, healthy pregnancies,  and so much more.  Many requests have not gone as expected - death in the family, sick children, surgeries required, cancers galore.  

I wanted to share with y’all a tidbit from Fr. Mike Schmitz’s podcast from March 13th called “It’s nothing personal: Dryness and Difficulties.”  At the end of it, he discusses discouragement.  I wanted to share with you some of his words (slightly edited for readability).

Here’s what Fr. Mike had to say about our wounds.

“We also have our own wounds… But sometimes God lets you endure the discouragement [and the wounds].  He lets you live with it.  Why?  Sometimes it’s those discouragements that leads you to him more than ever.  I know this is how God got my heart.  It wasn’t through my amazing awesomeness, it wasn’t through success or achievement.  It was through my wounds.  And through my being discouraged with my own wounds that God said, I’m not going to give you healing.  I don’t want your healing, I want your heart.  God allowed me to experience certain wounds because he doesn’t want my healing, he wants my heart.  God says to St. Paul, my grace is sufficient for you.  You live with this wound because my power is made perfect in your weakness.  I want your heart more than I want your healing.”  

Full podcast HERE.

I want to end there, but wanted to say one more thing.  Thank you for journeying with us and for your continual flow of prayers.  The mystical Body of Christ is a beautiful thing to be cherished!

Love to all!

Kate and Dave

Free prayers! Get them while they're hot!

There are so many personality tests out there that you can take.  Tells you the things that you already know about yourself, but now you have letters and words attached to your personality - INFP, ESFJ, Melancholic, Phlegmatic, etc.  The Catholics got into this market, too.  There is a spiritual gifts assessment, too.  Some friends and I spend an evening doing this months ago, and one of the strongest ones for me was Intercessory Prayer.  Meaning, when you ask me to pray for you, I will.  I've always felt a strong desire to pray for others.  That being said, I’m not very good at praying for myself, which is why these past two months have been really great, because I have had all y’all praying for me!  The last post I said I would be praying for you during chemo.  And some of you have sent me prayer requests. I wanted to let you know that I am writing prayers requests down and I will bring them with me to every chemo session and I will pray for you by name.  So if you want me praying for you, send me an email, text, or message me on FB.  

I originally said chemo was going to start on Monday, but we moved it to Tuesdays.  Tomorrow’s day 1!  My blood work is great, I have regained so much strength, I am continuing to recover really well from the surgery, and the port is put in and ready to go.  Thank you in advance for the prayers!

Love to all!

A happy happy Easter to everyone!  The Lord is truly risen!

And now, a moment to melt your heart:

Thomas giving his cousin, Becca a sweet kiss during Easter celebrations.

Fol-on-foxy-lady

Like I said last time, every day I feel better and better.  I am walking around more, eating full meals, albeit a limited diet, and life is returning to a new normal.  It’s funny how busy it can be even though I’m not doing much.  Kids have a way of keeping you busy.  

The doctors feel I am doing so well, they want to start chemo end of the month.  Here’s the dirty deets: Chemo cocktail called folfox (What does that fox say?) - 2 drugs.  One is platinum (keeps cells from dividing) and the other is 5-FU (keeps cells from multiplying).  Well it is appropriate to call chemo FU, right?  Side effects are fairly minor all things considered - severe sensitivity to cold (like use an oven mitt to take things out of the fridge), numbness in fingertips and toes, sores in mouth, on hands and feet, and other typical chemo stuff.  My gorgeous set of locks will happily stay in tact and I should be able to carry on my daily activities quite normally.  

We’ve been inundated with cancer information.  We had the opportunity to meet with two oncologists, one last Friday and the other yesterday.  One of the great things about MDA is all of the doctors communicate with each other, so you aren’t relying on one person’s medical expertise.  Therefore, we can go with any doctor and expect quality medical care.  The great thing about meeting with those oncologists is that we were able to attain vast amounts of information and start connecting some dots.  The official cancer diagnosis is stage III (followed by numbers and letters that I won’t get into what they mean because it’s very nuanced) appendiceal adenocarcinoma carcinoid tumor.  Thanks to this diagnosis I can no longer exclaim “It’s not a tumor!” 

I’ll break it down:

Stage III - based on size of tumor and where it spread to - spread past 3 layers of the appendix, but not past the fourth layer (fat), and was found in the lymph nodes

Appendiceal - Found in the most ridiculous organ of your body. 

Adenocarcinoma - cancer that forms in mucus-secreting glands.  Breast, colon, pancreas cancers, etc. are all adenocarcinomas.

Carcinoid - slow-growing, non-spreading type of neuroendocrine tumor originating in cells of neuroendocrine system.

The chemo is to treat the adenocarcinoma.  We are calling it the insurance policy plan (adjuvant therapy).  Without treatment very likely cancer will return and with treatment, the number goes down to 25%.  We’ll take it!  

It will be 12 cycles given every two weeks, and I’ll be finishing up the end of September.  

Following chemotherapy, they will do a CT and we will go from there.

Physical update complete.  The only thing I would add here is when chemo starts, I’d love to offer it up for you and your intentions, so please feel free to let us know how we can pray for you.  Our specific prayer request is for the chemo to kill any rogue cells quickly and efficiently.  We are offering continued prayers of thanksgiving for all you have done for us.

David wants to provide an update for you regarding physical things for the house, but he’s dealing with a birthday boy (Thomas turns 3 today!) who is throwing a fit right now.  It’s his party and he’ll cry if he wants to.

Love to all!

Famine to Feast (Someday)

My darling wife, home at last.  

Dear world.  I am home - been here since Wednesday morning.  Thank God for an amazing surgeon (Dr. Ch) who championed my release 2 days prior to her fellow’s wishes.  Being home really is the best medicine.  I’m eating better, resting better, and so happy to be around my happy family.  We thank God for the amazing network of support that has done SO much for us already - meals, house cleaning, financial support, child care.  

Before all this chaos entered my life, I was living in my own bubble of the chaos of 4 little ones at home.  It was good - lonely and fulfilling, depended on the moment.  I went on with my simple life - emptying the dishwasher, teaching our now 6-yr-old how to add, dressing the kiddy bugs for their adventures at Mother’s Day Out and Pre-K, managing disputes, you know - living life as a overworked, overtired mother.  But there was peace. I have (as you have read) an amazing supportive husband, and I knew I was doing my best to follow God’s will and raise little souls to love and fear him.

With this diagnosis and the trauma of surgeries/bowel obstruction and all that entailed, I was thrown into a situation where my main focus of life shifted.  No longer worrying about whether the kids made the beds,  the focus was to survive, to make it moment by moment.  I can honestly say that I have never experienced such pain, nor have I known such an outpouring of grace from God, and prayers from our Lady, and the Saints.  This is what meant the most to me: your prayers truly sustained me in the weakest moments.  I have heard people in the past say how they could feel your prayers.  Now I can say I palpably felt every offering of yours and still do.  

This cancer diagnosis has done something remarkable for me - I’ve been under your attention in a very different way.  So many people from my past and present have come out offering support.  I liked living a life under the radar, so I wasn’t sure how this was going to go.  We needed prayers, so we pleaded to you, and you have responded.  We are humbled - truly humbled and grateful for your support in our lives.  This isn’t how I would have pictured this year going, but as things have played out, I’m flabbergasted by your outpouring of love.  Thank you.  Thank you.  Thank you.

Every day is better than the previous day.  I am eating better bit by bit.  Yesterday I tried my hand at a PB&J with no adverse reactions.  Today I ate a boiled egg.  You don’t know how awesome normal bowel function is until it’s gone and they stick a plastic tube down your throat.  I am regaining strength slowly, and my mental focus is improving.  David and I are processing and the kids are acting like they always have.  

The road is long, but as each day brings signs of improvement, I don’t lose hope easily.  I’m thankful for some relief for my body as I recover.  One of my favorite things about these past three weeks is the opportunities I’ve had to pray.  I could have twiddled my thumbs in that hospital bed, but I listened to the Rosary, the daily readings, podcasts about the good work that we offer to God (Fr. Mike Schmitz, you rock!).  In some ways it was like a retreat, but better than a retreat because I was suffering - I was able to physically offer up my sufferings to unite me to Christ and to bring you with me as I drew closer to Him.  I prayed for every single one of you - prayers of thanksgiving and prayers for your deeper conversion closer to Christ.  One of the daily readings was about Christ’s temptation in the desert (My sister-in-law and I also watched Fr. Dave’s talk on the Holy Spirit and the desert - highly recommend).  After hearing that reading thousands of times, for the first time I was able to relate to Christ on a very different level - I was fasting, too, like I have never fasted before (and wouldn’t choose to on my own - It’s not so safe to do that to your own body, I would think).  How weak and how tired I was (and still am), how he avoided temptation when he was so weak and tired.  I prayed for the strength to bear the suffering as he did.  Oh Lent - you offer us opportunities.  Let us take you up on them so that we can suffer with Christ and in doing so, gain his strength, his support, his graces.

As I continue this journey, especially when the chemo starts up and I get really uncomfortable again, those prayers for you will continue.  

We cannot stress enough our gratitude for your outpouring of love.  I love each of you so deeply.  Thank you.

Freedom!

Really short update tonight.

If everything goes well overnight, Katie will be discharged tomorrow, and will finally be coming home!

She is cleared to eat a full diet, but will be taking things very slowly to start with.  She'll primarily be on the BRAT diet - Bananas, Rice, Applesauce, Toast - for a couple days, then will start adding one or two foods per day until she's back to a normal diet.  

We will come back to the surgeon in about a week for a checkup, then will be meeting with a couple different oncologists to find the one we like.  She's still very weak relative to before the surgery, and is not allowed to pick up anything heavier than a jug of milk for about 8 weeks.  She won't be able to care for our kids alone for a while, so we're working on finding some help around the house on a more permanent basis.  

The blog posts will probably be much less frequent now that she's home, though they may pick up again once chemo starts, or perhaps after we meet with the oncologists and know more about what to expect form chemo.  We'll see. 

I know I say this every time, but I really can't thank you enough for your prayers and support over these past 2 weeks.  You have sustained us through what we hope is the hardest part of this illness, and we're looking forward to life resuming some kind of normalcy, even if it won't look like it used to for a while still.  

Thank you again, we love you, and may God abundantly bless you!

David

Food and Facts

Just a quick update today, but good stuff nonetheless.

Today, for the first time in two weeks, Katie ate something besides clear liquids and didn’t get nauseous.  The doctors have cleared her to eat whatever she wants, with the direction that she ‘use discretion’.  She’s taking things slowly in reintroducing real food to her system, and things seem to be going very well.  Today, she had some smoothie, some bread, some chicken noodle soup, and some applesauce.  I say ‘some’ in front of each of those because it’s little bits of each, but it’s a huge step in the right direction.  

We also got some more information from the pathology department.  Everything that was removed during the second surgery was taken down to pathology to be checked for cancer, and everything came back negative.  Praise God, and thank you again for your prayers!!  With no detectable evidence of any other cancer in her system, the doctors are pretty bullish about one course of chemo knocking out any residual cancer cells.  

Kate is walking more and more, and even made it out to the gardens there at MD Anderson today.  My sister was with her today and texted me this picture.  Isn’t my bride lovely?

It looks promising that Kate will be coming home this week, and we’re hoping for Wednesday.  She is getting pretty tired of being in a hospital, and is ready to come home to the kids, to our own bed, our own couch, and everything that goes along with being home.  That said, I fully expect that after a couple afternoons with our four very energetic children, there will be a very small part of her that misses the quiet of the hospital.  But that will pale in comparison with seeing their smiling faces again and getting to be a part of our daily lives once more.  

One last thing - I want to thank each individual person who has donated to us.  When I see the notification that someone has donated, I start mentally composing a thank-you note, trying to find some way of saying how much their support means to us.  The finances are important, yes, but more important is the solidarity that it represents.  As I’m sure you can understand, I haven’t had the chance to actually write any of those Thank You’s.  I still hope to some day, but please forgive me if that’s not for some time.  

Ok, that’s all for tonight.  Thank you again for your prayers and support.  We love you, and may God abundantly bless you. 

David

Family Fun Minus One

Apologies to those of you who have been checking the blog for an update this weekend.  There was a lot going on - all good - and I was too beat to get to it.  

For starters, yesterday we held John’s 6th birthday party, and it was a rousing success.  If you don’t already know our families, then you may be surprised by the numbers here.  I have two sisters, and Katie has a sister and a brother.  Between us, we have 16 kids.  One of my sisters and their kiddo live in California, so even with just immediate family, we’re already at 15 kids age 9 and under.  John got to invite just a few of his friends, but with all their siblings, that number rose to 27.  27 children under the age of 9, most of them under 6.  So I don’t think I’m exaggerating in saying that Saturday was a crazy day.  

You may be wondering, “With Katie in the hospital, and given all the family has been through lately, why didn’t you postpone, or at least downsize the party a bit?”  Because of this:

For the past two months, when it came time for prayer intentions as school, John has prayed, “That I have a good birthday party!”

So, as Katie told me earlier last week, postponing and downsizing weren’t really on the table.  My sisters-in-law were good enough to pull me and the kids away from the party for a quick family picture, which turned out like this:

Or this, if you’re into the whole ‘pose nicely for the camera’ thing:

Ok, on to the reason that you’re here - Katie has made really good progress this weekend.  The only real challenge has been the pain, which she’s working through.  They’ve had a hard time finding a balance of meds that will help manage the pain, but not make her so drowsy or numb that she can’t walk.  As you may recall from earlier, walking is the treatment for recovering from intestinal surgery, and it gets the bowels to ‘wake up’ and start doing their thing.  So Katie has been suffering through more pain than she’d like in order to walk more.  

On that note, I was humbled this weekend when some friends of our asked us to pray for their child, who will need surgery in October.  I was reminded that as Christians, and especially as Catholics, we believe that suffering isn't meaningless.  I have always admired Katie's affinity for intercessory prayer (praying for other people), and there's no better time for it than when you're suffering.  Because we're this mashup of animal and angel, we believe that what happens to the body has an effect on the soul, and visa versa.  Among other things, this means that our suffering in body unites us with the sufferings of Christ, and the prayers of those in suffering are in some way especially effective.  Don't ask me to get into the theology on this - I was just a youth minister once upon a time; Katie was the theology major.  Or better yet, check out Catholic Answers.  I'm sure they have some good explanation for what I'm trying to say. 

Anyway - my point is this:

If you have something that you'd like us to pray for, please let me know.  You can use the comment box below, send us an email directly, message us on Facebook, send a text - whatever.  If you want us to pray for you for something, just say so.  We'd be honored to do so, and it'd be the least we can do for all the prayers you have offered on our behalf.  

Back to Katie - this morning (Sunday), Katie and I went to Mass at the chapel there at MD Anderson, and it was great.  It’s a funny thing to say given the situation, but it’s really nice to be able to pray during Mass rather than wrangle kids.  Katie received Holy Eucharist at Mass, even though she is on a clear liquids diet for the moment.  Our nurses (who are also Catholic, by coincidence) may or may not have told her it would be fine.  

After Mass, Katie took a nice nap, and then all that walking she’s been doing finally paid off.  I’ll spare you the details, but let’s just say that everything that should be moving… is.  So call it the walking, call it great doctors, or call it a Eucharistic miracle, but our prayers have been answered!

#PrayForFarts  #Success  #Peristalsis  #WooHoo!

The doctors are very pleased with her progress, and will likely upgrade her to a full liquid diet tomorrow or Tuesday, followed by a full diet a day or so later.  She may be able to be discharged as early as Wednesday, but we’re not holding our breaths (unless we’re in the room when… well never mind).  

Thank you all again for all your very specific prayers for this - it’s so good to finally see real progress on her recovery.  Katie’s nutrition is in good shape, thanks to the full-nutrition diet they’ve been giving her through her IV since Thursday evening.  Apparently they measure every aspect of her nutrition levels and taylor-make a specific nutrition bag for her every day to give her exactly what she needs.  The nasal-gastro tube has been removed (WooHoo again), and she’s starting to look like her old self again!  I forgot to get a good picture of her today - I'll try to get one tomorrow. 

Ok, a couple housekeeping things before I close for the night.  

1.  The YouCaring page is up to nearly $15,000 as of this writing.  That’s completely ridiculous.  If you’re interested, I updated the description over there with a better idea of what we think we’ll need the money for.  Feel free to click on the YouCaring link in the left menu section of this blog to read that.  

2.  We’ve had a number of incredibly generous offers to help with the things I mentioned last time.  Thank you so much!  It looks like we have the fence covered, and we’re getting some help on the plumbing, too.  If for some reason you feel called to help with either of those things or with the gutters / siding, please let me know.  I still can’t process this much generosity from all of you - it’s so humbling.  Thank you.  

Finally, if you’re wondering about me specifically, you can rest easy knowing that I have spent the last 2 nights sleeping at home thanks to Kate’s sister, Lisa, and am planning to spend another 2 nights sleeping in my own bed thanks to my sister, Dr. MC.  The sleep is doing me a lot of good.  Thank you for your prayers for me - they keep me going each day.  

Thank you again, we love you, and may God abundantly bless you!

David