Twenty Days in April

I don’t remember who suggested it, but someone told me that I should start a Facebook group for family and friends when Kate got sick, in order to update everyone at once, instead of individually. What follows are my updates to that group, which started out with just family and grew to have over 2,800 people from all over the world!

The Story of Kate the Great’s Big Adventure

April 7, 2018

How did this begin? When did we notice anything different? My husband Ben was actually the first to notice Kate was paler than normal. That was about a week ago. Then she started getting bruises on her legs that she could not explain. We thought that was weird. On Friday, April 6, Kate had a low fever and did not seem like herself, just kind of tired. The next day, she still did not feel very well, but she had dance pictures for company, so I was in the bathroom with her, spraying her hair into a slicked back bun and putting in bobby pins. She began to cry, then just whimper. It was so strange, because she never does this. I only remember her crying once since she stopped being a baby. I asked her what was wrong and she looked at me and said it just hurts and then she kind of went limp and passed out in my arms. I called for Ben, and he carried her to the bed. She stayed in a blank daze for about 20 seconds. Then she began to talk to us again. She said her waist felt tight and her ears were hot and ringing. We changed her out of her leotard and into a T-shirt and gym shorts and flip-flops, and Ben had her three big brothers gather in the living room with us for prayer before he carried her to the car. We went to Urgent Care where they drew blood and tested for mononucleosis. The doctor came back into our room and told us that her white blood cell count was extremely high and that we had to take her immediately to the emergency room. “She’s fighting something really big.” I had no idea what it could be. At the ER, they tested her blood again and also did an EKG and a chest x-ray. Three different doctors came and examined her and questioned us about her symptoms. Then one of them sat down and told us that she was not going to lead us on. Everything that the tests showed pointed to leukemia. We were going to be admitted to the pediatric oncology wing of Memorial Hospital that night.

At that moment, God dropped a word into my heart- adventure. I knew our lives were changed in a matter of hours, but it was going to be okay. We were on a new adventure. We were going to meet new people, we were going to learn new things, and we were going to depend on God more than ever. We were going to be in this together as a family.

The doctors did not waste time. Kate immediately had a blood transfusion. That night was a sleepless one. However, the whole time I felt covered in God’s loving faithfulness. The doctors and nurses I met were amazing. My friends were texting me encouragement and letting me know they would do anything we needed. I knew I would be able to see the Body of Christ give glory to God through this epic, amazing story He was writing.

April 8, 2018

We are overwhelmed with love and support. I can’t praise God enough for His faithfulness, His enduring love. His praise will ever be on my lips! The Body of Christ is a beautiful thing. I have no need to fear. He has us.

Scenes from Sunday the 8th: The only treatment for Kate today was that she received platelets.

Kate the Great is the master dancer! Playing Just Dance on the Wii while battling leukemia? That’s beast mode!

Procedure in 30 minutes. Please pray now. Bone marrow aspiration, lumbar puncture with spinal fluid extraction and first dose of chemo, PICC line insertion. Should be over by 12:45. General anesthesia applied only once for all procedures, which is why all three minor things at once.

The procedure went perfectly this afternoon! Big update on diagnosis coming soon!

April 9, 2018

Diagnosis Day! Dr. Whittle gave us an hour of his time after Kate’s procedures were over to explain Kate’s diagnosis and explain the treatment plan. The official name for her disease is Pre-B Acute Lymphoblastic Leukemia. Everyone says that if you HAVE to get a cancer, this is the one you want! It is a two-and-a-half-year treatment plan, but the outcome will most likely be a cure at the end of it and a normal life in the future! The first 6 months are the most intense part of the treatment, and she will be experiencing the effects of chemotherapy. The last two years he said she will be almost like a normal kid (hair growsback!). *For now, we are here until Saturday for the first full round of chemotherapy. Then we will go home! Over the course of two and a half years, we will only be living at the hospital for a total of 5 weeks! Most of the time she will come in up to two times a week, sometimes just once a month at the end, for outpatient chemotherapy!*

When you pray, pray that Kate is able to handle these side effects during treatment, which can include hair loss, water retention, sore mouth, nausea, nerve pain, and others. Pray for no long term side effects like heart problems, bone problems, and reproductive issues.

Continue to praise God with me for His complete and total healing that Jesus gave Kate on the cross! Thank you again for all the notes of encouragement, offers of help, visits, and mostly your prayers.

April 10, 2018

Kate wanted to start a vlog! Here she is! She insisted I was in it, too, because, she said, “This is your adventure too, mom.” Kate started chemotherapy today. This is the night she would write her prayer in the prayer journal.
Scenes from our third full day in the resort (hospital): Kate-1, Chemo-0

April 11, 2018

Praising God early this morning with these lyrics:
Your love is devoted, like a ring of solid gold
Like a vow that is tested, like a covenant of old
Your love is enduring, through the winter rain
And beyond the horizon with mercy for today
Faithful you have been and faithful you will be
You pledge yourself to me and it’s why I sing
(“Ever Be/Tremble,” Caleb + Casey)

April 11th update: Today has been a tough day. Nothing too bad, but Kate didn’t have much energy. Turns out her platelets were low, so they are giving her more platelets now, and she should feel better soon! The doctor’s report this morning contained good news:There is evidence of lots of DEAD cancer cells already! Praise God!

Her uric acid isn’t going up and her kidneys are stable.
And some concern- phosphorus in the blood is too high, so she’s taking a new pill for that, for a couple days.

She got LOTS of gifts today which brighten up her mood and her room and supply us with fun activities for when we go home. We still are full of peace and hope for the future!

April 12, 2018

We got a visit from Holly Girl, the therapy dog this morning! Standard Poodle. It brought us joy.

Medical update today:
Doctor says everything looks good. She’s doing as well as can be expected, and he’s proud of Kate. Her white blood count is at 400, which is SUPER low, from the chemotherapy which is killing all the cancer cells, but also the healthy white blood cells. Therefore, right now she is immune suppressed and can’t have visitors who have ANY symptoms of a cold or illness of any kind, and no children. She is getting more platelets today and is wiped out, and still has stomach pain.

Prayer warriors: Kate has high blood sugar (from the steroids) and low platelets again, so she has been wiped out all day. Pray for those two things to become more stable, and for healthy white blood cells to multiply!

Sweet moment: first thing this morning, Kate wanted to talk about hair. Specifically, why NO hair would be a good thing. Here is her list:

1. Don’t have to wash it! (Hair washing takes the most time in the shower.)
2. Never hot on her head and neck!
3. Can try different styles without it being permanent! (wigs)
4. No painful combing through knots!
5. She doesn’t go to a school with bullies who will tease her.
6. It won’t get in the way when sleeping.
7. Dance hairstyle=easy!
   This list was all her. I’m so proud of the way she is determined to be positive.
   She’s out of bed and wanted to go for a walk. Praise God! Here’s a short vlog for ya.

April 13, 2018

Kate woke up this morning feeling much better. She even ate a big breakfast! Then when she took her first steroid, she started feeling weak and had a headache again. She is sleeping now. Her first dose of the chemo drug Peg asparaginase is coming very soon. We are going to monitor how she reacts to it. Pray for no reactions.

Stacy Martinez took photos today.

Prayers answered: Absolutely NO REACTIONS to the chemo today! She’s feeling fine and is eating. All of the sudden she is craving Olive Garden…?

Doctor’s report for Friday, April 13th:
No side effects from Asparaginase (chemo drug)! Cancer cells are being slaughtered! White blood cell count is down to 300, keeping her neutropenic, which means she can get sick easily so we have to be careful.

*Biggest news is that the steroid she needs to be on is causing her glucose levels (blood sugar) to be too high, so we’ll be checking her sugar and taking insulin like a diabetic while she is on that drug (only 2 weeks total). No one likes finger pricks, and this mama doesn’t like giving shots of insulin in her thigh! Thanking God that this will go away soon.

We are now expected to go home Sunday instead of tomorrow. That will make 8 days admitted for this first round of treatment. Kate is getting tired of being here. She says 3 days was enough. However, she still has a positive attitude. One of my favorite things is in the middle of the night when a nurse will wake her for vitals, she rolls over and smiles up at them, giving so much joy, when most patients are angry. Thank you for praying!

April 14, 2018

The doctor says chemotherapy is going well. He expects us to go home tomorrow, Sunday.

Today she had a red blood transfusion because her red blood cell count is so low. It makes her feel a lot better when she gets that. Ben and I have had our diabetes education. And now we know how to check her blood sugar and even give her an insulin shot when she needs it! She will be on the steroids for 9 more days or less, and the doctor says her diabetes will be gone after we stop that drug. He says that once we see her body making her own platelets that’s when we know we are headed towards remission. Pray for that to happen soon.

Today, Kate told me that she really likes the sound of the word “home.” We had a discussion about how the saying “home sweet home” means so much to us now!

She discovered a love for Memorial Hospital’s chicken fingers, and ate 5 big ones today! Her sugar has been stable today, and she has not needed any more insulin. Please pray that this continues throughout the rest of the nine days on the steroids. Once we fill all of our prescriptions and sign all the paperwork tomorrow we should be headed home to sleep in our own bed before coming back on Monday morning for the second lumbar puncture and some chemotherapy (outpatient). Thank you for all of your prayers, and all of the gifts, and all of the visits! We are totally surrounded by God’s love through all of you.

Uh-oh… being stuck in a hospital for 8 days will make you start watching TV shows that you’ve previously been able to avoid. Kate and I are officially on the “Fixer Upper” bandwagon now.

April 15, 2018

Look what’s on the board today!
Breaking out! Vlog

Home sweet home #startcleaningeverything

We’re home, but there aren’t any RNs or oncologists here! I feel like a first time parent again.

April 16, 2018

Procedure this morning at 8:30.
Kate’s getting another bag of platelets, a dose of chemo through her PICC line, and another lumbar puncture with a dose of chemo. Thanks for covering her in prayers! This time it’s outpatient, so we can go home after.

We slept well last night in Kate’s room. I praise God for His provision years ago when Lori gave Kate a nice bed with roll out trundle. It’s perfect for sleepovers, but also for mom to get a good night’s sleep as a night nurse. He thought of everything!

A note about visitors: I’d like to let everyone know, just in case you missed it in one of my updates, that Kate’s immune system is suppressed right now. I could tell you her CBC and her ANC levels, but it’s easier for me to explain it the way it was told me:
It’s like a stoplight.
Red means Kate can’t go anywhere public because she is extremely likely to catch anything she comes in contact with. No children can visit, and only adults who are fully healthy and have washed their hands. This means Kate and I will be spending our days at home.
Yellow means Kate’s immune system is slightly compromised. She can go places, but must wear a mask in public. All healthy visitors welcome, with hand washing.
Green means Kate’s immune system is strong and she doesn’t have to wear a mask in public! But please still wash your hands, for Pete’s sake.
This morning’s lumbar puncture went well, despite having to wait for platelets. I imagine the sloths from Zootopia down in the blood bank. Anyway, she was starving after we were through at 2pm, and wanted Taco Bell, so that’s where we went (drive through). She’s home, medicated, loved on by puppies, and now sleeping soundly. When she wakes up, she will take a bath and change her sheets and clothes. I am getting a handle on the induction medication calendar now.

April 17, 2018

Praising God for His grace and mercy today! Kate feels great this morning! She has eaten an egg and some peaches, played with Jacob and the wrestling puppies, smiled and laughed a lot! She is extremely happy to be HOME. Her blood sugar was 210 this morning, which is elevated but not too high, and her stomach doesn’t hurt at all! We celebrate every moment she feels normal. Be grateful for your health, folks! I hope we all never take it for granted again.

Kate: “Today was amazing. I’m grateful for today. God answered our prayers and gave us a good day.”
She’s right. We did have an amazing day. Kate ate three healthy meals, blood sugar never got too high (just slightly), and best of all she met Maddie, her new mentor, who had the same cancer when she was 4-7, and is dedicating her life to help kids get through this difficult time (with her career goal of becoming a pediatric oncologist). She brought panda
socks, made crafts with Kate, and encouraged her to keep living bravely. How amazing is our God, who lavishes us with every good and perfect gift?

April 18, 2018

Not all days will be amazing. Please pray hard for Kate right now. Her stomach hurts and she won’t eat, so I can’t give her her medicine. I’ve called the clinic and a nurse will call me back. I will update on this post as I know more. Other concerns are dehydration, since she doesn’t want to drink enough water, and weight loss. Nurse said it’s probably just being “backed up” and to definitely eat a bit so she can take her meds which are very important. Kate was just able to drink some warm honey water and take her medicine with some organic peaches. I think that she is going to be past this today.

We are headed to the hospital again with Kate right now. Please pray that it is nothing. We were told that we have to come in because she has a mild fever of 100.7, and chills. I will update on this post as I know more.

Kate was beginning to panic (very unlike her) since her chest hurts and it’s hard to breathe, so I joined with all of you in prayer in the name of Jesus, and asked Him to kick fear out and let Kate rest. As I prayed with my hand over her heart, her writhing stopped and her racing heartbeat slowed. She said she felt better, and God gave me this verse: Exodus 14:14 “The Lord himself will fight for you; you need only to be still.” Keep praying, friends! It works.

Test results won’t be back for 8-17 hours. Blood draw shows white blood cell count is at 200, almost nil. (Normal is 4000-10000.) Platelets low too. Pray for restful sleep for us both in the hospital tonight. Thank you so much.

In ICU now. Please pray.

Kate had a pretty violent two hours of vomiting blood and getting poked everywhere looking for another IV. Ben and I were by her side through it all, along with about 10 doctors and 25 nurses. She’s sleeping now, in ICU, and will be here for a couple of days while they find and fix the problem. It’s most likely a vicious ulcer caused by the same steroid that gave her diabetes. We don’t know how this will affect her treatment of cancer, but the chemo might have to look different for her. While she was spitting up blood, some got into her lungs, and they sucked it out. That’s all I know right now. But I want to say that Kate was so brave through it all, and composed enough to smile through blood at every nurse that spoke to her. She is my hero. There is no one better.

April 19, 2018

April 19 Nothing has changed from last night, and the doctors say today is very important for Kate.

Update: the bleeding isn’t the big problem here. She is fighting an infection that we have yet to determine. Her body is in septic shock. Pray for her heart, which is beating very fast, not to stop. And for the infection to die quickly. Also, her blood pressure is very low, so she’s not getting oxygen everywhere she needs it. And her fever isn’t subsiding. Intercessors: She’s on a ventilator. Still don’t know why her stomach and lungs are bleeding. Blood pressure very low. Pray for a miracle now! I’ll update on this post as I learn more.

Praise God! FINALLY the doctors for the day came in and talked to us, and for the first-time since 7pm, someone told us she was going to be ok. (Longest 12 hours of my life.) She’s fighting infection, and her lack of platelets gave us the scary bleeding everywhere, but 99% of the time that stops on its own once she is stabilized! Pray for that to happen now.

It’s not great news here from the ICU. Lungs are very sick. She’ll be on the ventilator here for at least another week. Blood pressure is low and continues to be a huge issue. She’s been poked all over, I’ve lost count. The doctors say she is stable, but that could change any second and she could deteriorate quickly. We were getting through this together, but now we have to get through it separately since she’s sedated. I miss her so much.

Doctor says, “I’ve seen kids pull through this, but it is by no means a guarantee.”

April 20, 2018

Prayer request: That Kate’s oxygen stays high, and that the oxygenated blood makes it all the way to her toes and fingers! No long-term damage to her extremities. They are cold, and her feet are showing some discoloration.

PRAY RIGHT NOW FOR A MIRACLE!! For her lungs to start taking in air. For her liver and kidneys.

Morning update:*Blood pressure has been good since 4am! Praise God! *Blood sugar has been normal, too, since they had her on a steady insulin drip. They stopped the drip and her blood sugar remained normal.*Core body still has fever of 102.3, down finally a bit from 103s, but hands and feet are cold. Pray for doctors to be able to reduce some medications that restrict blood flow to extremities.*Jaundice may be setting in.

We are coming out to be with visitors. There hasn’t been a moment today or yesterday when people weren’t out there praying. A book is there to write a prayer or note.

“Wait for the Lord; Be strong and let your heart take courage;Yes, wait for the Lord.”Psalm 27:14 I’m sure everyone wants an update. I do, too. But right now is the critical waiting time. Waiting to see if the antibiotics defeat the infection. Waiting to see if her blood pressure can rise. Waiting to see that her oxygen levels get closer to 100%. Waiting for her lungs to clear. Waiting… praying. It may be like this for another day or two. They are working around the clock to keep her stable while the antibiotics do their work. But you are PRAYING around the clock and crying out to God for total healing in Jesus’ name! I never stop thanking God for each one of you. I promise to update this group as I learn anything.

Praises: *Her oxygen is at 97%! Let’s pray it to 100%!*Her blood pressure has risen and is staying stable!*Her temperature is dropping! It’s down to 100.6, from 103s!*The bacteria we’re fighting is Pdeudomonas Originalis, which is really bad, but it has stopped growing. We’re fighting the effects of the septic shock her body is in.*That Ben and I got some sleep last night. Prayers: *Her lungs to be able to process oxygen and clear up!*Her liver and kidneys to return to full function.

This is what the doctor wants to see happen soon for Kate; please pray for:*Phosphorus levels to go DOWN. They could affect the heart. Very serious.*Kidneys to function properly and get with the program! There isn’t much they can do for them if they fail (in her condition).*The lungs to continue to accept oxygen and that it gets to all parts of her body, including those organs we’re praying for! This has improved drastically today!*No bleeding or hemorrhage. Coagulation factors are still not at all where they should be.Thank you for your devotion to praying for Kate. I am expecting a great outcome and miraculous story for us all to be able to tell.

Over a thousand members in this group praying for Kate! This is incredible. I am blown away by how much love God is showing us through all of you.

April 21, 2018

Keep praying for her kidneys. They are the #1 concern right now. Also her fever has gone back up to 102, and she has a bedsore. No other changes from yesterday.

Can I just put this out there?Kate has gotten many blood products to keep her alive and functioning. If you are a healthy adult, please consider donating blood in her honor. People like Kate depend upon it.

These are Kate’s nurses, Amy (daytime) and Ashley (nighttime). Cover them in prayer, and ask God to bless them and provide for them in every way. They are smart, caring, and amazing nurses who are devoted to getting Kate through this. I’m extremely grateful that they had 3-4 shifts in a row this week!

Lungs look worse. Pray for her gut as well.

Today is a slow, waiting day. Her infection has been managed and is all but gone, and now what we are dealing with are the effects of what her body did to itself when she went into septic shock. We are watching her lungs, her liver, her blood, and most of all right now, her kidneys. She must start urinating more! We need her kidneys to work right now. The update is that she is the same as yesterday with just a few minor improvements. Thank you for praying and sharing so more can pray!

April 22, 2018

Good report for last night! Last night, Kate was strong. Her feet were discolored greatly yesterday, with some toes being completely purple. They are returning to normal color, and they were able to find a palpable pulse in each foot! Overall, she was calmer, her blood pressure has stayed in the target range for a long time, and up slightly, with oxygen levels remaining in the upper 90’s, even though the ventilator oxygen levels have been turned down to 80%. Those will be brought down more today. They are continuing to back her off of the drugs she has been on, specifically she is now only on one blood pressure medicine instead of three. And that one is being decreased. No blood transfusions were needed last night. She tolerated being on her side for a few hours! She was also able to tolerate a sponge bath and change of sheets! I was able to sleep 6 hours, and Ben is sleeping soundly now. Praise God with me! Continue to plead with God for total healing for Kate!

Prayer covering for Kate today: Since Kate’s blood pressure and oxygen levels have remained steady for so long, they are now able to work on getting some junk out of her lungs. This includes CPT, and suction. Her oxygen levels will fluctuate during this time of treatment. Pray that she remains strong and the stuff comes out today so that her lungs will be at full function!

During treatment, her lungs started bleeding. They are going in with a scope, and giving her blood, and draining some fluid from her side now. Pray for no infection, blood to coagulate!

Doctors are working on saving Kate right now. Pray for her lungs to begin to function. Pray against infection from the interventions they’ve used.

They saved her. Praise God. Pray for her lungs tissue to get clear so she can breathe on her own again. Pray against any more infection.

Today was a roller coaster. Kate could have died today, had the surgeon on call not come in when he did. Pray for Lisa, the respiration therapist who “bagged” Kate for over 2 hours. Amy-RN, Dr. Hebert, Dr. Carney-surgeon (AKA “Swagger”), and countless others who ran and stayed and gave orders and took orders and worked to save her life. The update is that Kate has a drainage tube in each side of her chest, draining fluid from around her lungs. She has a second central vein line in the other femural vein. She has a catheter. She had started bleeding during the event, but they determined that the blood was not coming from her lungs, only from her nose and throat. They have put gauze pads up her nose and in her mouth to stop the bleeding. She is on the ventilator with full oxygen. *The good news: She is ALIVE. Her kidney function is better today, as well as her liver! Her blood pressure is great. She’s on the ventilator only, not the oscillator, which is the next step up. *The big, big prayer request: Her lungs. They have damage, basically substances in the actual tissues that are causing them to be too stiff and firm. We need her lungs to soften up so they can easily expand and contract. We are praising God, our good, good Father, during this storm. We are trusting in His timing for her ultimate victory.

April 23, 2018

Today the doctor says we aren’t going to do anything to rock the boat. “What’s the enemy of good?” he asked. A resident answered, “Bad?” “No,” he said, “Better.” He explained that sometimes, in an effort to make someone better, you do things that make them worse. He wants to hold steady today, to let Kate have a rest and heal somewhat. Therefore, we have this entire day to pray for miracles! Let’s ask God to do great things in her body today! Our prayer requests today are: her lungs- they must clear up and soften, her kidneys- they must continue to make lots of urine to get rid of fluids that she is receiving, her liver- it must continue to get stronger so that the doctor can give her medications she needs that might harm the liver, and feet- the oxygenated blood must circulate and warm the entire foot or she may lose some toes. Cover Dr. Ratajzak in prayer as he treats Kate over the next few days. Thank you times a million. We are held together by your love and prayers. Philippians 4:13 is true for so much more than sports; it’s the strength of Jesus that is getting us through this trial.

Prayer request: Kate’s bed sore on her lower back looks worse today. Please pray that it heals!

Well, she did it. She stayed steady all day and earned her balloon. Continue to pray for lungs, kidneys, liver and feet, but MOST OF ALL, let’s not forget that all of this would be healed a lot quicker if her bone marrow would produce the needed blood cells! She has leukemia which is preventing the healing from happening faster. Today was a more calm day for Kate, which had me more emotional than usual, probably because I had time to think about things. I am so very grateful that we are completely surrounded by love and God’s grace. It is only through him and his never ending love for us that I am able to stand through this.

April 24, 2018

Just met with her doctor. He says he is worried about Kate because of her lungs, which are stiffening, and at some point they won’t be able to force oxygen into them anymore. He says he has “no more tricks up his sleeves.” He will just keep making minor adjustments and waiting. Folks, at this point, it is only a miracle that will save our precious daughter. Let us all pray harder than ever!By the way, he was here Wednesday night/Thursday morning, and he didn’t expect her to survive that day, but she did. Love to you all.

Kate is holding steady. She is just really critically ill. All the damage to her lungs, kidneys, liver and feet happened the day she went into septic shock. Now it is a slow, slow road back to wholeness. Big prayer request today:The doctors are taking it slowly, so they won’t cause any unintended damage or crisis for Kate. Today they will be having a pow wow to discuss how to proceed with her treatment. Pray that they are inspired and have the wisdom of God as to what they should do in the coming days for her. Pray that when they introduce nutrients (calories) she responds well. Pray against infection from the several points where it could come in. Pray for her bed sore to heal and not get worse, because the doctor does not think she is strong enough to move to the super bed. Praise God for peace and his love and hope and joy! He is so, so good to us!

April 25, 2018

Her health is in decline, and ONLY a miracle will preserve Kate’s earthly life. If you are confident in the authority Christ gives to his followers, I beg you to speak out boldly for Kate to live. We KNOW God is good, no matter what. We trust Him in the valley.

April 26, 2018

Kate the Great’s Big Adventure continues, just not on this earth. She is safe in the loving arms of Jesus. I praise God because He is so faithful, loving, and merciful. I thank God for His gift of nine amazing years with the most wonderful daughter. We had no bad days together, and I have no regrets. HIS strength and grace will get us through the sad times ahead. Because of what the Lord has done, I have full confidence in the future, and hope that, though weeping may endure for the night, JOY comes in the morning. Thank you all for your love and prayers. My desire is that you keep on praying and drawing close to your Father in heaven.