Of all the chemo drugs Grace has received, Pegaspargase (PEG) feels the most unpredictable. Her initial introduction to the drug in August seemed to result in a quick downturn for her physically and when she ended up in the ICU, it seemed there was a correlation. I let the nurse practitioner know last Thursday about the situation and that we needed to watch her carefully when she received PEG again.
Today was the second time she was introduced to this important medication and unfortunately the results did not go well. They hooked the IV up to her port around 12:30 pm and we waited for the drug to start dripping into her bloodstream. The first 15 minutes are critical to see whether she would have an allergic reaction and the medical team was nearby in case of a medical emergency. With only 1ML through her bloodstream (out of the 100ML she was supposed to receive) she started coughing and then her face turned red as the coughing became more and more severe. "I don't like this", she said. "I'm getting really hot!". Apparently, her throat was swelling shut and she was beginning to choke. The staff team rushed in and gave her a quick epi pen and Benadryl and disconnected the IV. Her heart rate went to 180 and blood pressure dropped but praise God she quickly felt relief. A few minutes later with an ashen face and bloodshot eyes she started to calm down from the reaction and a few moments after that fell asleep. The rest of the day will be a quiet one for her.
The decisions are now in front of us. Do we try PEG again in the ICU and pre-medicate? Do we try a different drug (Erwinia) through intramuscular injections a few days a week for two weeks? I'm leaning toward the latter but please pray we have wisdom in figuring out next steps and of course please remember us on Thursday as she gets her second round of Vincristine and Doxorubicin. Life comes at us fast sometimes and while we know PEG is the preferred drug for this protocol, we also know that there is a God that we call Jehovah Rapha, "the God who heals". Nothing takes Him by surprise. We do the best we can with the information we have and God supplies the rest. He is sovereign. Pray we have wisdom to know the direction to go, that Grace would find continued healing and comfort, and that God would multiply our efforts.
Thanks for praying,
Jon and Katie
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Today was a great day of worship. I was invited to preach at The Sanctuary Church, a predominantly African-American church on the east side of Indianapolis and praise God, our entire family was able to make the trip. We were given such a wonderful reception and the congregation took time to pray over Grace for complete healing. This afternoon Grace spent time playing with a friend and we were able to make a late evening run to Target a few hours ago. For the most part, she is doing well. Her hunger is picking up a bit and she's had some mild leg pain, but no major side effects have been felt and she hasn't been nauseated since Thursday evening.
Tomorrow we head back to the hospital for another IV of a drug called Pegaspargase (PEG) at 11:30 am. In most cases, the side effects include loss of appetite and mild nausea but for a number of kids they have an allergic reaction and in a few minor instances can develop seizures. The only other time she took this medication was on Day 4 of Induction at the beginning of her treatment in early August. Unfortunately, it was immediately after this drug that she started going downhill ultimately leading to the PICU. The doctors say they don't think the two were related, but please pray that tomorrow's treatment would go well, that her counts would stay up, and that we can finish strong before her next round of drugs on Thursday.
I'll share a longer post tomorrow. God bless.
Jon and Katie
Yesterday took a tough turn in the evening. Grace came home from her treatment, ate a little oatmeal and toast and then watched cartoons for the early part of the afternoon before falling asleep around 3:00 pm. She slept much of the afternoon and early evening and didn't wake up until around 7:00 pm. We tried to give her something to eat but she didn't seem very hungry and then unexpectedly started to throw up a few times on the couch. I took her into the bathroom where she threw up some more. Once we cleaned everything up and gave her a bath, we gave her some more anti-nausea medicine by about 8:30 pm, tried to have her eat a little something before her DEX (steroid) and then at 10:00 pm she threw everything up once again. It was a pretty rough night for her and I ended up sleeping on her bedroom floor in case she threw up at night.
But praise God for a new day! This morning Grace woke up after a long night's sleep and we were able to stay ahead of the nausea. Around noon she really turned a corner and by this afternoon seemed to be doing much better (a little weak but her personality was back). We watched "The Santa Clause" and then had a lot of fun opening a box full of handwritten notes from a sister church in New York. The children's ministry of North Park Wesleyan Church did an incredible job sharing love and encouragement and Grace was so excited to see all of the notes, pictures, stickers, and special prizes (see picture).
Again, thank you for your continued prayers and generosity this holiday season at www.hopeforgrace.net. We appreciate your incredible support in this process.
Jon and Katie
We just returned from the hospital, and I wanted to offer an update on today's treatment.
The visit began with a quick check of her vital signs and accessing her port to get blood samples in order to determine her ANC. Today it was at 3200 which is a great number and so she was cleared to receive treatment. The lumbar puncture was first and they got her ready and then sedated her. They have this process down to a science and only minimal sedation was needed. In about 5-10 minutes she began to wake up (groggy) and after a few more minutes they started her Vincristine IV and then Doxorubin IV (see picture). They also gave her a medication to suppress the nausea she may experience as a result of the drugs. Tonight she will start her steroid medicine as well. We came home around 12:00 pm and when I left she was on the couch watching cartoons with her pillow and blanket. It will be a quiet day for her today. I mentioned yesterday that these medications have various side effects and I wanted to offer a few specifics on how to pray. While there are many possible side effects, the descriptions below seem to be most specific for Grace.
1. Vincristine- the biggest hurdle here is constipation, nausea, and nasty bone pain in her legs and feet. Vincristine seem to attack her nervous system and muscles/bones. The preventative measures are lots of water, stretching of muscles and movement, and laxatives to combat the constipation. She is also on a drug to help her nausea.
2. Dex (steroid)- this drug makes her very hungry and moody/angry. In the induction phase it is administered for 30 days whereas in this phase she only receives it for 7 days at a time and then has a break. That's the good news. The preventative measures are lots of food and lots of patience :).
3. Doxorubicin- biggest side effects here are nausea, lower blood counts, mouth sores, and hair loss. They think the hair will start to come out around December 15th and be pretty much gone by Christmas. The low blood counts will come around the same time and its possible she may need platelets, blood tranfusions, etc. The preventative measures are drugs for the nausea and good oral hygiene as well as preparing her mentally for losing her eyebrows and hair.
Thanks for praying and we will keep updating pictures at www.hopeforgrace.net. God bless!
Jon and Katie
I'm hoping to post every day for the next month or so and give important updates on how Grace is progressing through this next phase of treatment. We trust the added information will help you know how to pray. Grace has progressed very well the past couple of months and while there have been a few aches and pains since the first phase of treatment and a few ER trips, for the most part, she has moved through these last couple of phases like a champ.
Tomorrow we start Phase #4 called "Delayed Intensification", and normally this is the most difficult part of chemotherapy. She will lose her hair in another week or two and the medication is pretty intense. In the morning she will have a spinal injection of Methotrexate and an IV push of Vincristine. In addition she will start a steroid called Dexamethasone for the next week and receive the strongest chemo drug called Doxorubicin. The drug is nicknamed the "red devil" for its bright red color and potency and we would specifically ask you to pray for Grace's body to be strong and resilient in the face of all these chemicals. May God give her strength! I won't list all of the possible side effects to these drugs but please know we covet your prayers.
Knowing she will lose her hair, Katie took her to the hair salon today and gave her a shorter haircut. She decided to let her wear some purple streaks for a few weeks! She was so excited. She LOVES THEM! They say that when her hair grows back this Spring, it might come in a bit curly or a slightly different color. I think she's praying for purple!
Here is a promise from Scripture we are standing on over this next month. "Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken". Psalms 55:22. The treatment will get started around 8:30 AM.
Just a reminder, a fund has been set up for Grace's medical care.
To give go to www.hopeforgrace.net.
Jon and Katie
Thankful! There's probably no better way to describe how we feel when it comes to your ongoing prayers and support. This weekend I was looking back at the pictures of Grace during the induction phase in August and early September (photo #1) and where she is at today (photo #2) and Katie and I are so thankful for her progress over the past few months.
In the protocol for leukemia there are often two very difficult seasons of treatment. The first hurdle is Phase #1- Induction (August and September) and the second hurdle is Phase #4-Delayed Intensification (December and January). We know that life could get complicated in a few weeks and yet, God is in control and we feel your prayers and support. Thank you for being there with us. I will start journaling again daily beginning December 5th as she starts the next phase so you can be up to date on how to pray.
I also want to take a moment to express our gratitude to George and Tracey Jones and Horizons Church, our first church plant in Dallas, TX. They have taken the initiative to start a fund for Grace called "HOPE for GRACE". Moving forward, this fund will provide a tax-deductible option for any financial gifts given to help cover the costs of Grace's medical care and ongoing treatment.
If you would like to make a donation as we head into the end of the year, please visit the website below...
Jon and Katie
This is a quick update of our time yesterday and the five areas I asked you to pray. Thank you for your prayers. I told Katie yesterday that I've been amazed at the way Grace has pushed through all of this and it is definitely a result of your prayers.
1. Peace She had a great amount of peace and really did well. She is starting to realize that she is a bit "different" than the other kids with her port, doctor visits, medicines, etc. On the way to the hospital she was looking out the window and then said to Katie, "Since I have a port...am I still me?" I often wonder what is going on in her little mind and this was a revealing question.
2. Good Counts Her counts were awesome at 1500+ and she was able to receive the chemo needed. Treatment went forward without a hitch!
3. Healing We are believing that she is healed and that her body is responding well. This is one we will simply live out by faith!
4. Recovery Grace had a great afternoon. We had friends over last night for coffee and she was talkative and pretty interactive with them as well. Continue to lift her up today and tomorrow.
5. Witness We were introduced to a few new team members at Riley yesterday and are believing God is going to continue to use this for his glory.
Jon and Katie
Today is the final round of chemotherapy for Grace in this 3rd phase of leukemia treatment. She starts the 4th phase on December 5th. These are the TOP FIVE things we are praying for as we approach her appointment at 11:00 AM EST.
1. Peace: Please pray that Grace has peace this morning and is able to go through the necessary labs and IV treatments with a calm sense of God's provision.
2. Good counts: We are praying that her white blood count and neutrophils would be high enough for her to receive a treatment today. If she can move forward today, it will mean more recovery time for her body as she approaches December 5th.
3. Healing: Although the cancer is in remission and we believe Grace is healed, we also know that the preventative nature of the chemo can damage healthy cells as well. Pray for Grace to experience supernatural healing and recovery of her good cells!
4. Recovery: Typically the day or two after a treatment can be tough on her body and we are praying for her to bounce back well this afternoon and tomorrow. Pray that God would enable her to be strong and that there would be no disease or infection that enters our house.
5. Witness: We continue to pray that this entire ordeal would serve to point people to Jesus.
Thanks for praying,
Jon and Katie
This morning I was reading John 11 and the story of Jesus raising Lazarus from the dead as part of our D-Group reading plan. Perhaps the most famous passage in that account is John 11:25, "Jesus said to her, I am the resurrection and the life. The one who believes in me will live, even though they die". Indeed, death doesn't have the final word when we have faith in Christ. But it was vs. 4 that stood out to me this morning as Jesus received word that his friend Lazarus was sick. "When Jesus heard this he said, 'This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it".
Why do bad things happen to innocent people? Why did Lazarus die? It's a question that people have wrestled with for ages and one that I'm not going to attempt to solve in one post. Grace has a tough road ahead in December and we are bracing ourselves both mentally and spiritually. I'll share more about the process in a later post but she will lose her hair, undergo a lot of tough chemo, and have a few hospital stays. I don't know why this happened to her but I do know we live in a fallen world and I know that because of sin, all of us will die. It isn't the way it ought to be. But God takes these things and he turns them around. It's why the resurrection is so important to our faith. God took the evil of the crucifixion, death, and sin and he overcame. In the same way, when we shake our heads and wonder "why" he often forms something good out of it. Yes, in the end he can even be glorified in something like cancer.
What's strange in the passage of John 11:4 is the fact that Jesus stated, "this sickness will not end in death" and then later in vs. 14 "Lazarus is dead". Perhaps dying is different than something ENDING in death. This will not end in death. It will end in resurrection. It will end with the "Son being glorified through it". In the same way, Katie and I have the promise that this sickness for Grace will end in Jesus being glorified. We are bracing ourselves for December but also looking with faith in the miracle that will come and God being glorified this Christmas.
Jon and Katie
We have successfully made it through the weekend without any fevers or trips back to the hospital! Grace did a great job at her treatment this past Thursday (ANC 2200) and other than being a bit loopier than usual coming out of her sedative for her lumbar puncture, everything went well. We decided to keep her home Thursday afternoon and Friday to help her body heal and that proved to be a good move. She is doing much better. Her final treatment will be one week from tomorrow for this phase and then we will start PHASE #4 "Delayed Intensification" on December 5th. Most parents and former patients agree that DI is the hardest part of the process. Your prayers are appreciated.
I also wanted to share a brief note of where we are at financially with our insurance through the State of Indiana and with Medi-Share, a Christian based health care company that shares medical expenses across their 400,000+ members. A number of you have asked how you can give financially and I have been a bit slow to respond. This has been primarily due to the fact that we wanted a better understanding and track record of how bills would be handled. We applied for CSHCS (Children's Special Health Care Services) the week after learning about Grace's diagnosis and were approved in early September. Most bills post-September have been covered by CSHCS and any leftover bills area handled by Medi-Share. However, the bulk of our hospital stay was in August and only able to be covered by our sharing program. While Medi-Share has been phenomenal and have shared 100% of all our bills there is ONE that remains outstanding. It is a fairly large bill and we are still awaiting a final answer and whether we will need to pay a portion or if it will be covered 100%. In addition we have a high-deductible plan and based on future treatments will max out our deductible every year for at least the next 3-5 years.
At the same time we had friends from the Dallas, TX area approach us about starting a charity for Grace called "Hope for Grace". It was recently approved and moving forward, any financial donations will be tax deductible and processed through this charity. A website has been developed for ease of giving and we will share more in the next week when it is officially live. In addition, I will also start posting to Caring Bridge again on a daily basis beginning December 5th as we start "Delayed Intensification". It's all in God's hands!
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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