Katie took Grace to the hospital today for her next round of chemotherapy for this phase. Her ANC (measures her immunity) has been slowly dropping over the past month and today it was around 1000 (been dropping each week from 3500 to 2500 to 1400 and now 1000). We are praying it stays high enough for her to continue to receive treatment every 10 days (she's on round 2 of 5) so she can make it through this phase without a hitch. She is slowly learning the routine of treatment and today she faced it all like a champ. While at the hospital she connected with another little boy that also had leukemia and a port. It was the first time she's seen another kid with a port and it helped her normalize the experience just a little bit. We were also encouraged to visit to hear from the boy's parents that he made it to the end of his treatment without much hospitalization. We have struggled a bit knowing that December and January are going to be tough treatment months for Grace (along with her hair loss) but God reminded us through this conversation that he is in control.
So, we are praising God for the good days we our experiencing. On Thursday my mom and dad came to the house and on Friday my mom boarded a plane with Natalie, Claire and Lauryn for Denver, CO to visit my sister and brother-in-law. That has allowed the older girls to have some fun and given Katie and I a much needed break to spend some extra time together. My dad has been a huge blessing around the house as he is helping repair our patio and enjoying being grandpa to Grace!
God is good,
Jon and Katie
PS: I've attached a photo we took on Friday when Grace and I went up the Circle Center Monument (mom and dad chickened out). Oh yeah, as far as the hat is concerned...go Niners!
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It's been almost six days since we last posted and things are going quite well for Grace. She has had very limited side effects from Phase #3, although she has only had one round of treatment thus far. The treatment plan for this phase is escalating chemo every 10 days for two months (5 rounds) so we know the "medication" will get stronger and stronger. While we are praising God for her response this past week, we are also aware that with the amount of chemo increasing, God will need to strengthen and sustain her through this next round.
Grace is beginning to understand her diagnosis and become a little more comfortable with it. She shares openly with friends that she has leukemia and a port. She wears her face mask without complaining much when she's out and around a lot of people. She knows that wearing her mask and frequently washing her hands will help keep her out of the hospital. Grace received a bag of hats from a foundation that was started by the parents of a little girl with her same diagnosis. She was so proud of those hats and wanted to take them around to the neighbors to show what she would wear when she loses her hair in the winter.
A highlight of Grace's week was going to the library for the first time since diagnosis. We were in for a treat as "Dan the Music Man" was there. Grace sang and danced with so much enthusiasm. I watched her with tears in my eyes and just felt full of gratitude for how far God has brought her. My parents came into town Thursday and yesterday and we were gifted a free visit to the Children's Museum. Grace had a ball and we even found this cutout of two doctors at Riley. This journey will have many ups and downs but we are trying to enjoy one day at a time.
Jon and Katie
PS: Our medical bills have begun to arrive and many people have asked if there is a way to give financially. Ill be sharing more next week, but some friends of ours from Texas (thank you George and Tracey!) asked if they could start a charity called "Hope for Grace". The details have been in the works and it appears things are set up and ready to go. I'll share more details next week.
Courage is not the absence of fear but strength in the face of fear. Grace has been more courageous these days. She takes her medicine without complaining (normally), she is doing better at her doctor's appointments, and there is much less crying during her lab work and chemo treatment. This was especially true this past Thursday. A few days ago, Grace explained the change in perspective in her own words, "I prayed alone in my bed last night that God would help me be brave and a good girl at my appointment", she said. "And he did! He helped me be brave." This was the first time either of us had heard she prayed on her own.
Katie shared a recent post about her own battle with fear and the reality that over time God has been replacing her fear with faith. It seems faith is like a muscle – if it is not used, it will atrophy. On the other hand, when we experience challenges in life or difficult circumstances or truly decide to step out and live by faith, God makes us brave. Over time he replaces the fear with faith. When Grace was very little we used to play the song "It Is Well" by Bethel Music and she would soon start to fall asleep. Today I was reminded of another of our favorite worship songs by the same group titled "You Make Me Brave" and an incredible children's video that reminds us of having courage https://www.youtube.com/watch?v=H8F3I05ZXW0.
Jon and Katie
Today started the beginning of Phase 3 of treatment for Grace and something described as "Interim Maintenance I". This is an 8-week phase of chemotherapy that primarily consists of two drugs administered through an IV. The drugs are Vincristine and Methotrexate and she receives both of them every 10 days in increasing dosages each round. We are trusting that her body will respond to each round with no significant side effects (most common are cramping, constipation, mouth sores and nausea). On the 31st day of this round she will have another spinal tap.
Katie and Grace went into the hospital for the outpatient treatment around 10:30 am today and didn't get home until 2:00 pm. A typical visit starts with checking her vitals and then drawing labs from her port to determine her blood counts and ANC (absolute neutraphil count). The ANC is the determining factor in whether she is able to receive chemotherapy (it essentially measures the strength of her immune system) and today her ANC was around 1500. They aren't able to order the chemo until the labs come back so a simple 5-minute IV injection ends up taking a few hours. But...she always comes back with a fun gift and the doctors and nurses do their best to make it as positive an experience as possible. Today she came home with a "Tangled" doll of some sort and coloring books.
The rest of the day went well and she played all afternoon. Please continue to pray for her over the next few months as we move into flu season. Infections are the danger zone for her this fall and winter but we are so grateful she seems to be doing well.
Thanks for your continued prayers,
Jon and Katie
Best. Day. Ever. That's how Grace would have described today. The last time her friend Katelyn came to see her, Grace wasn't able to walk, her face was abnormally swollen, and she wouldn't smile. In fact, most of her friends would have described her as "scary" during those dark days of induction. Katelyn was a bit scared to come over today because of her last experience with Grace and asked her mom to come in the house with her.
But this was a new Grace! Her body is strong, her spirits are up, and she ran out of the house to give her friend a hug. Katelyn laughed and the two of them played and played. They played dolls, they ran through the sprinkler, they went on their scooters down the sidewalk, and had a ball. Later, Grace's friend Liv came over as well and the three of them sat on the couch watching You Tube Kids, laughing, and eating a snack. Unfortunately, in the midst of all the activity today, Katie didn't get a chance to snap a picture, but we will look back on October 1st as a great blessing from God. While many of our posts can at times paint a challenging picture, we wanted to also share a praise.
The "Consolidation" phase of treatment has gone incredibly well with the biggest challenge being the loneliness that comes with other friends attending preschool or kindergarten during the day. Katie and I have also struggled a bit to find time to be alone since this saga began. Today we were reflecting on the fact that we are finally at a place where we feel comfortable with the older girls watching her for an evening. We praise God for that as well.
Thank you for your continued prayers,
Jon and Katie
P.S. Grace begins Phase #3 of her chemotherapy (Interim Maintenance 1) on Thursday with two different IV drugs. We are praying her body continues to be resilient and strong during this next round of treatment. I'll share more about Phase #3 later this week.
Today we had an answered prayer as Grace’s ultrasound came back without any major concerns. She still has some scarring from the sepsis on her liver and gallbladder, but that should heal over time. I am so thankful that God created our bodies with the ability to heal. Thank you for praying with us for this. Also her counts are looking good to start her next phase of treatment on October 3rd.
I wanted to share a personal praise that God has been revealing to me. As a child and into my young adult years I REALLY struggled with fear. For a long time, I prayed and memorized scripture and asked God to heal me. Though I knew God had healed me from many fears, I have always wondered if that healing would carry over into my worst nightmare situations. As I was walking the other night and praying, I had this realization that fear is not center stage in my heart right now. It hit me that God has not only taught me how to trust him for the everyday things, but he has prepared my heart to trust him in the big things. I had a flash back to that scene from Home Alone when Kevin is yelling out, “I’m not afraid anymore!” “Did you hear me?” “I’m not afraid anymore!” I felt like yelling it out in celebration just so Satan could hear me.
There are some victories you don’t know you have until you have been tested. You don’t know how God will comfort, sustain and reveal himself to you until you are in the trial itself. I know for sure now that the fear of the possibility of my child having cancer is much greater than actually knowing my child has cancer. The fear excluded the experience of Jesus with me in the fire and all the friends and family that would surround and battle in prayer with me. So I am celebrating that this week. Celebrating that God can show us good things in the hard things.
I suppose that is why Paul says in James, “Consider it pure joy whenever you face trials of many kinds.” Does this mean fear or worry never enter my mind? No. It just means fear doesn’t rule my heart and if it does enter, I lay that thought at the foot of the cross and I receive God’s gift of peace, “Lord my God, I called to you for help and you healed me.” - Psalm 30:2. Thank you again for all your love, support and prayers. You have been God’s hands and feet to us.
A specific prayer request for Grace: Please pray for her friends to stay healthy so she can play with them. She isn’t able to attend pre-school right now, Sunday school, play areas, or have play dates with anyone who is sick. We have had several cancelled play dates and she has just been lonely. Mom needs a break too and apparently I am not very good at playing Littlest Pet Shops. ;)
Short post tonight. Katie will plan to post a longer update tomorrow.
Please be in prayer for tomorrow morning at 8:30 AM as we head to the hospital for an ultrasound and labs. If you remember during the induction phase Grace became septic and the bacterial infection wrecked havoc with her liver, gallbladder, kidneys and other organs. They noticed spots on her liver (more than likely a bit of scarring from septic emboli) a few days after she was recovering and needed to run a series of tests to rule out candidiasis.
This ultrasound in the morning is a final check of her organs to make sure they were correct in ruling out candidiasis and to make sure that the scarring is beginning to disappear. Please pray for a routine checkup and nothing more.
Also, pray for a good morning in general. It seems like it's been a long day. Then again, that may be due to the fact that we have FOUR GIRLS! Good night...
Jon and Kate
A small fever is sometimes all it takes to put Grace in a tailspin. After I wrote a glowing post on Sunday afternoon, Grace decided to go to bed early and Katie took her temperature. The thermometer read 100.3. Anything at 101 or over and they have instructed us to go to the hospital immediately. The next few readings were all across the board... 99.8, 101.3, 100.2. The challenge of this kind of situation is knowing that if we do in fact pact up and go to Riley, it's no small ordeal. We waited and waited and finally called the clinic. They asked us to come in immediately.
And so...yesterday around 3:00 pm, Katie packed a bag for her and Grace (assuming they may need to spend the night), I drove them downtown, dropped them off, parked and then met them in the clinic. The process is nothing major, but for a 4-year old it's hard to get accustomed to being poked and prodded. They accessed her port, they drew blood, drew blood again in her arm to rule out a port infection, started her on a broad spectrum antibiotic and then performed all of the other vitals required. She cried and cried and cried. It's something that starts to wear on you as a parent. She's been through so much, that she assumes the worst.
Fortunately, her ANC came back over 11,000 meaning her neutrophils were fighting off something (most likely a virus) and because of her high counts they sent us home about an hour and a half later. We were met with rush hour traffic and got home around 5:30 or 6:00 pm. They will run the cultures through the labs and see if anything starts to grow to determine if there is a bacterial infection. If so, we will be back at the hospital tomorrow. If not, life goes back to normal. Someone commented yesterday, "we're following your story on Caring Bridge and she looks so good! It's almost like she doesn't have leukemia". Days like today remind us that her life is not "normal". We also learned more about future rounds of chemo and cherish these days even more, knowing what might be coming in the future.
Jon and Katie
Here's a strange question. Does Grace still have leukemia? According to her last bone marrow test, they could not detect any cancer in her blood. In fact, it's quite possible that all treatment moving forward is simply precautionary at best. And yet, the protocol for leukemia is established. Grace will continue to receive future rounds of chemotherapy through March or April and then move into the "maintenance" phase for another 18 months. This is the wise course of action and based on thousands of previous cases of leukemia, it's the best path forward. It's the path we have chosen.
However, it's quite possible that Grace is cancer free. Yesterday afternoon, Grace and I went to IKEA for dinner and today, we bounced on the trampoline and later went for a walk. We've had a lot of quality time together and I've started to dwell on this idea that she might be cancer free. She's doing so well these days and playing with friends and enjoying being a kid, and the side effects of the oral medications are quite minimal. Is it possible she is completely healed? I'm praying in that direction and also praying that she would not only be healed but thrive in the months to come. Thanks for praying with me!
Jon and Katie
It was a long but successful morning. The hospital was more crowded than usual, the registration process slower, the waiting longer, the lab results took more time, but Grace finally had her chemo treatment and was on her way. Today, her treatment consisted of intrathecal chemotherapy. There are really only three methods of treatment. The first is oral, the second is intravenous (IV) and the third is intrathecal (IT).
Intrathecal chemotherapy simple means the medicine is administered into the spinal fluid rather than by mouth or through the blood stream. This cerebrospinal fluid (CSF) protects the brain and spinal cord during movement and most chemotherapy drugs are unable to reach into this area from the bloodstream due to something called the "blood-brain barrier", a layer of membranes that exist to keep out toxins that could otherwise damage the brain.
A typical visit for intrathecal chemotherapy is as follows: 1) no food after midnight, no water after 6:30 am. 2) topical numbing cream administered to the port at home, 3) registration at hospital, 4) checking vitals (blood pressure, temperature, height, weight, etc) 5) insertion of needle into the port and drawing labs/blood 6) waiting for lab results to determine blood counts (white cell/red cell/platelet) 7) administering a quick-acting sedative through the port while attached to monitor (typically only knocks her out for about 10 minutes) 8) spinal tap procedure 9) Grace wakes up but must remain flat for 30 minutes to circulate medicine and prevent a spinal headache, 10) Watch monitor (blood pressure, heart rate, oxygen, etc) and then remove port attachment and send home when everything is back to normal.
So...that's the process and her recovery was fantastic this afternoon. We are praising God this is her last IT treatment for Phase #2 and in two weeks we will wrap this portion of chemotherapy up and enjoy a 7 day break from the drugs. Thanks again for praying.
Jon and Katie
Thanks for visiting our website and learning more about how you can pray for Grace and our family during this season. To bring you up to speed, on Monday of this week, our four-year old daughter Grace went to the doctor because of a prolonged fever and was sent to the hospital for further testing. On Tuesday, she was diagnosed with leukemia (Acute Lymphoblastic Leukemia), and last night we received her treatment plan. Today we started the first day of a 28-day chemotherapy plan called the "induction phase". The prayer during this phase is to bring the cancer to remission and that her body responds well to the treatment. The end of the first 28 days may mean a number of pathways forward and so we will pray for God to bring healing each step of the way and for the best possible outcome. Already, we are thankful the leukemia diagnosis was ALL (as opposed to the alternatives) and that she was flagged as CNS-1 (Central Nervous System), which simply means they didn't detect any cancer cells (lymphoblasts) in her spinal fluid. The typical treatment after the "induction phase" is 6-9 months of ongoing chemo and then two years of "maintenance", but we are praying for God's continued healing. Rather than going into the details of the "post-induction phase", we will wait to see how she responds during this first month.
She will be receiving a daily dose of oral medication and a weekly dose of IV medication this month as well as a few other treatments sprinkled in. There are a number of side effects including some nausea, cramping, moodiness, constipation, etc. and we are praying God would give her the resilience needed to fight this thing off. We will try to keep you updated as to how you can pray on a week to week basis both for Grace and our family. We are doing well given the circumstances, have a posture of faith as we move forward, and believe that prayer is powerful and effective. God is going to use this situation to touch hundreds and thousands of lives and is going to deepen our faith, the faith of our family and friends, the faith of our church family and many others during this season. I could write much, much more but I want to leave you with 25 verses we are claiming during this season. We would invite you to submit others as a collective way of encouraging one another and boosting our faith. We aren't receiving visitors at this time as she is at risk for infection but hope to see many of you soon! Thank you for your prayers and support.
25 Great Verses
Isaiah 41:10 – So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Proverbs 17:22 – A cheerful heart is good medicine, but a crushed spirit dries up the bones.
Psalms 62:6-8 – Truly he is my rock and my salvation; he is my fortress, I will not be shaken.My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, you people; pour out your hearts to him, for God is our refuge.
Exodus 14:14 – The Lord will fight for you; you need only to be still
Deuteronomy 31:6 …Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.
Psalms 55:22 – Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken.
I Peter 5:7 – Cast all your anxiety on him because he cares for you.
Isaiah 58:8-9 – Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard. Then you will call, and the Lord will answer; you will cry for help, and he will say: Here am I.
Romans 15:4 – For everything that was written in the past was written to teach us, so that through the endurance taught in the Scriptures and the encouragement they provide we might have hope.
Psalms 103:2-4 – Praise the Lord, my soul, and forget not all his benefits— who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion
Romans 8:28 – And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Matthew 11:28-29 – Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.
Matthew 10:30-31 – And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows.
Psalms 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 him.
Psalms 46:1-3 – God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.
Hebrews 11:1 – Now faith is confidence in what we hope for and assurance about what we do not see.
James 1:3 – because you know that the testing of your faith produces perseverance.
James 5:13-14 – Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord.
Hebrews 11:6 – And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him
I Peter 1:21 – Through him you believe in God, who raised him from the dead and glorified him, and so your faith and hope are in God.
I Peter 4:19 – So then, those who suffer according to God’s will should commit themselves to their faithful Creator and continue to do good.
Romans 10:17 – Consequently, faith comes from hearing the message, and the message is heard through the word about Christ.
I Corinthians 2:4-5 – My message and my preaching were not with wise and persuasive words, but with a demonstration of the Spirit’s power,so that your faith might not rest on human wisdom, but on God’s power.
2 Corinthians 1:3-4 – Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.
Philippians 4:8 – Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.
Thanks for praying,
Jon and Katie
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