Facing a Giant

I love to cheer for the underdog. Maybe that is why the story of David and Goliath is so captivating. My favorite portrayal of this Biblical action showdown is in the VeggieTales version of Dave and the Giant Pickle.

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Little Dave played by Junior Asparagus finds his “warrior” brothers cowering and hiding along with King Saul and the Israelites. The giant pickle, Goliath, taunts the army of Lord. Little Dave gets fired up. God’s honor and power is in question. He sizes up the big problem, an enormous boxing pickle. Even though he is little, Dave trusts that God is bigger and able to defeat his enemy. With God, all things are possible even when it looks hopeless.

I want to be a David. But, honestly, sometimes I can relate more to his brothers who tried to avoid making eye contact with the giant. Either
paralyzed by fear or pretending all is fine when it really is not.

Circumstances taunt me, enticing me to run scared. To give up. To compromise. To believe a lie. To doubt my God…to doubt His power, His love and His goodness.

1 Samuel 17:45-46
David said to the Philistine [Goliath], “You come against me with sword and spear and javelin, but I come against you in the name of the Lord Almighty, the God of the armies of Israel, whom you have defied. This day the Lord will deliver you into my hands…”

David faced the giant with five smooth stones and a slingshot. One small boy, one stone, the One True God and an enemy falling down to defeat.

If it had taken two stones, would David still have believed? If David was loading the fifth stone into his slingshot, would his resolve have been as great?

Hypothetical, philosophical type questions with no real answers. I do know that David was a man after God’s own heart. His character consistently reflected an abiding trust in a faithful God.

Twelve days ago, Chloe began the prednisone for her current flare of ulcerative colitis. Nine days ago, she and I resumed the Specific Carbohydrate Diet.

Friday night she went snow tubing, an activity she missed the year before because she felt too sick to go. She had a fantastic time flying down the slope, giggling and laughing with a friend. No panicked bathroom trips interrupted her adventure.

I thought just maybe she had turned a corner. It was wonderful.

Saturday morning, however, the new found health, came to an abrupt halt. Bloody, frequent stools resumed.

I want to cower. I want to hide. Maybe if I don’t look the giant in the eyes, the symptoms will go away. But what I see is unavoidable.

I feel like I have loaded the fifth and final stone in my slingshot. But my resolve isn’t as strong as with the first stone. Victory has not been easy to secure.

Chloe’s care and treatment has been such a winding path. There have been improvements and setbacks. Never since this whole thing began has it become easy or simple. Never has it felt stable or finished.

Like David, I size up my giant. Ulcerative Colitis in my sweet little girl looks so big. The symptoms of pain, urgency, bloody diarrhea, and anemia. The threat of flat growth curves now. Potential surgery and increased risk of colon cancer in the future.

I do not know what victory will look like. I do not know what form healing will take. I believe that God is good, and I trust that He is able.

So like David, I face the giant. I conclude that measured against the greatness of my God, ulcerative colitis cannot defeat us.

Psalm 27:1
The Lord is my light and my salvation- so why should I be afraid? The Lord is my fortress, protecting me from danger, so why should I tremble?

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What a Year!

The second of February marks the one year anniversary of following the Specific Carbohydrate Diet (SCD) for Chloe and me.

The last two weeks Chloe resumed a gluten free low residue diet which was easier to comply with during her hospital stay for the rotavirus and also seemed prudent as she faced a colon clean out for a procedure which was eventually cancelled.

For eleven and a half months, though, we fanatically adhered to this gluten-free, grain-free, lactose-free, sugar-free specialized diet.

When we began on February 2, 2013, we were looking for a way to stop the cycle of her out of control autoimmune response that was causing the ulcerative colitis and its symptoms of loose & bloody stools, pain & cramping, overwhelming urgency & overnight potty trips, fatigue & anemia.

We were looking for a way to bring Chloe’s symptoms under control. We were looking for a way to find relief and healing for her without beginning more powerful medications or interventions.

She was only 8 years old. We had to try.

Initially, the introduction diet was terribly hard. For five days, Chloe was sick. She experienced the flu-like symptoms known as die-off.

But then, the nearly constant stomach pain Chloe experienced was gone. Even my regular headaches disappeared as I participated in the diet simply as a show of solidarity.

The restrictions were tough; although, even Chloe agreed that the improvements in her health were worth saying good-bye to certain foods. We decided to keep adhering to the SCD.

In June, we saw a decline in her health with significant weight loss and returned anemia. We feared that the SCD was not enough to break the cycle of ulcerative colitis. But the diagnosis proved to be c. diff instead.

The c. diff plagued her through rounds of antibiotics. Into the fall, her symptoms from the c. diff made it challenging to be too far from a bathroom. She often rushed off the soccer field. Her energy was low as she fought this insidious bug.

As our first Thanksgiving and Christmas on the SCD approached, we persisted on the diet even though it was difficult to see any positive effects because of the c. diff.

The week before Christmas, Chloe received a Fecal Microbiome Transplant (FMT) for the recurrent c. diff. Within a day, it appeared that the procedure had failed to cure her which was confirmed with another positive stool study.

The first week of 2014 she began another course of antibiotics while she was scheduled for another transplant.

Within a week she was hospitalized for severe dehydration from what turned out to be diarrhea from the rotavirus. As the doctors searched for a cause, she tested negative for c. diff.

Ultimately she tested negative three times for c. diff. Perhaps the combination of the FMT, the round of vancomycin and the clean out caused by the rotavirus drove the c. diff out. Her second FMT was scratched.

Which brings us back around to our first SCD anniversary. All the changes over the last two weeks have left Chloe in a flare of the ulcerative colitis. With the c. diff gone, it is time to go back to the SCD. We begin again on Monday, February 3.

Looking back, there were some very difficult times. With Chloe’s health. With happily complying with the diet.

However, we stand ready to begin again. Certainly knowing more of what we are getting into.

We have been tested, but not defeated. We are wiser, but not jaded. We are realistic, but hopeful.

On Monday, we take another step in this journey with Chloe and ulcerative colitis. Each step dependent on Him, our Great Physician, our Redeemer, our Healer.

Psalm 37:23-24
The Lord makes firm the steps
of the one who delights in him;
though he may stumble, he will not fall,
for the Lord upholds him with his hand.

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Chloe & me sitting in her hospital bed at Children’s of Pittsburgh.

Update on Chloe…January 30, 2014

In the hospital, Chloe tested negative for c.diff. After a week at home, she again tested negative. This is good news. We have been battling this bacteria since mid-June. Therefore, the FMT procedure that was scheduled for today, then moved to Monday, has been scratched (even after LOTS of donor tests).

The bad news is that Chloe seems to be having a flare of the ulcerative colitis (bloody, loose stools) possibly caused by the damage from having c. diff, the rotavirus or even possibly the changes in diet during her hospitalization.

The doctor is prescribing prednisone for the flare which should produce improvement by mid to late next week. Chloe & Kim will return to the Specific Carbohydrate Diet (on Monday) also to address the flare. She will see her doctor in mid-February for an assessment of how it all is going.

Thank you for the continued support through your prayers.

Todd & Kim

Hebrews 13:5b For He Himself has said, “I will never leave you nor forsake you.”

Even If…

Romans 12:12
Be joyful in hope, patient in affliction, faithful in prayer.

Philippians 4:4-7
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Going through the weekend without knowing if Todd’s blood test would be positive, borderline or negative for the Hepatitis A antibody was tough. I wanted to know so badly what the next step would be for Chloe’s Fecal Microbiome Transplant (FMT). Even if there was a change in direction and a change in donor, I wanted to know.

But there was no news on Friday. So I remained at the fork in the road.

I felt like shutting down. Wondering if, maybe, hibernating during the waiting time would be a good coping strategy. Just wake me up when there is news.

With a husband, a crew of five kids, chickens, ducks, bunnies, a dog, cats, etc., checking out was not a realistic option.

Nor was it a good option for a girl who professes faith in Christ.

The verses above don’t seem to give any sort of permission for hiding or hibernating until the challenges or unknowns pass me by.

I prayed. I still felt like fleeing. So, I prayed some more. I tried to remain fixed on truth. Even if the plan looked different than I ultimately hoped.

Monday morning I dialed the phone number for Children’s Hospital of Pittsburgh and felt the rush of adrenaline that comes with nervousness or fear. I got through to the nurse without leaving a message. [Amazingly that happened twice yesterday morning.]

Long story short…after several calls to Children’s, the hospital lab that drew the blood tests and the lab that was performing the diagnostics, I found that the results for Todd’s antibody test were final.

A little more waiting for the word from Children’s. Finally, Todd’s test was non-reactive or negative for Hepatitis A.

He is good-to-go as the donor. Chloe is scheduled for the FMT on Thursday. She begins the clean out process this evening and through the day tomorrow.

Prayers for Chloe are still appreciated. Prayers for her health, no colds or fever, so the procedure can go forward. Prayers for her as she goes through the clean out (again) and for any worries and fears she has. Prayers for her while under general anesthesia and during the colonoscopy. Prayers that the FMT will cure the C. Diff and benefit her as treatment for the Ulcerative Colitis too.

I am not sure why we were stuck in a holding pattern. Why was there a big speed bump?

I am still learning to have confidence that God is good all the time. I am still learning to rejoice always even when I feel like “taking my ball and going home.” I am still learning slowly, but surely, to trust Him even if…

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Update, Awareness & Hope

Driving through snow & ice, Chloe & I made it safely to Children’s Hospital of Pittsburgh last Tuesday. She delivered her “sample” and saw the doctor.

The appointment didn’t give many big answers, but built a framework for where we might be headed depending on test results.

The next day the doctor phoned with the results while I was out. Phoning back a few minutes after 4pm on the Wednesday before Thanksgiving seemed like an impossible connection. With an assortment of menu options, I just stayed on the line and the person who answered put me through to the doctor directly.

God is so gracious.

Chloe tested positive for C. Diff again (or still). She has returned to treatment with the antibiotic while we wait for a scheduled Fecal Microbiome transplant.

Please pray for Chloe as she waits since she has been experiencing greater abdominal pains. Pray that she would be accepted as a patient for this procedure. Pray for direction in terms of which one of us should be the donor and for the screening process and any associated costs. Pray that the procedure would be of great benefit to Chloe’s health.

This is an experimental procedure done with a donor stool delivered into the colon via colonoscopy. There are some risks yet the success rate with C. Diff has been incredible (around 90%) plus there is the bonus of possibly improving the ulcerative colitis as well.

This “new” low tech procedure highlights the benefits and need for continuing research into Inflammatory Bowel Diseases. December 1-7 is IBD Awareness Week. Chloe is one of 100,000 children suffering with ulcerative colitis and Crohn’s diseases. Check ccfa.org for more information.

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I am hopeful. Chloe is hopeful.

I leave off with Chloe’s promise verse.

Jeremiah 29:11
For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.

What’s Going to Happen?

Since Chloe stopped the antibiotic for C. diff, there have been increasing signs that it has not truly left her.

After a bathroom break this morning, I asked her about her “motions.” With a despairing expression in her eyes, she told me about the blood and the increasing watery stools.

Her doctor appointment is next Tuesday. She is scared.

What is going to happen? Is there something to worry about around the next corner? Or the corner after that?

I don’t have the answers. I don’t know what happens down the road.

I do, however, know the next immediate steps. Collecting a stool sample on Monday. Visiting the doctor on Tuesday.

Psalm 119:105
Your word is a lamp to my feet
And a light to my path.

His word sheds enough light to illuminate our feet with each step in our walk with Chloe and ulcerative colitis. The Lord continues to equip us with what is necessary to walk through the darkness of fear and disease without stumbling.

I still do not have the answers. Or know what happens down the road.

I turn her to the One who does.

Even when we cannot see down the path, He knows.

He beckons us to trust Him. To follow Him.

One step at a time.

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A Long Way, Baby

It has been almost two years since Chloe’s official diagnosis of ulcerative colitis. It has been nearly 10 months since Chloe and I began the Specific Carbohydrate Diet. It has been about 6 weeks since the most recent stool study showed the return of the C. diff.

Chloe has now finished up the taper of the antibiotic (vancomycin) prescribed for her recurrent C. diff. On Tuesday, November 26, two days before Thanksgiving, she will go back to Children’s Hospital of Pittsburgh to meet with her doctor and have a stool study to check to see if the C. diff is back in command.

The doctor told us that if she still has it, rather than another course of ever stronger antibiotics, there is a treatment called Fecal Microbial Transplant (FMT).

In internet research, I have found studies that show cure rates with FMT for C. diff of around 90%. Plus, FMT shows up in separate reports that indicate high rates of improvement for ulcerative colitis, including a small sample with children.

I have found myself, therefore, wondering what to pray. Chloe’s growth has flatten out this year, so it is especially important to get the C. diff back in balance and the ulcerative colitis under control.

But could it be that God is using the C. diff to lead to the FMT treatment? Could it be that a positive answer to my prayer for healing would come in the form of a positive stool study for C. diff?

I am not sure what the next step will be, how the doctor will respond if the C. diff is gone or what to push for. Chloe has come a long way with the diet and the medications, but the prospect of FMT, for recurrent C. diff and UC, encourages me that there could be more substantial healing.

I recognize that my medical training and information comes from a Google search which doesn’t hold up to much scrutiny. However, I am an expert on my child and need to be her strongest advocate.

I pray for God’s plan to be clear. Show me the next step. I pray for His wisdom to guide me. Help me to follow Your path.

I pray for God to lead her doctor to care about Chloe as an individual. Help him see her as a beloved daughter. I pray that he will be open to providing the best possible treatment options for improving Chloe’s condition. Give him a humble heart.

A long way. Continuing struggles. Worries. Illness. Yet, God has been faithful.

Even when I do not know what to pray, He does.

Romans 8:26-28 NLT
And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. And the Father who knows all hearts knows what the Spirit is saying, for the Spirit pleads for us believers in harmony with God’s own will. And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

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