An Ambulance and an Anniversary

 Home just 8 hours. Fever spiked and we readmitted to Children’s. Neutropenic and low blood counts

Please pray for Millie. 

So overnight was emotionally draining. After spiking a fever, we (mom & dad) had to decide what to do, where to take her, and how serious it was. We were encouraged to go to the closest hospital. We have 2 each about 30 min in different directions. We chose one halfway to Children’s. By the time we had finished the protocol and then transport to Children’s by ambulance, we had decided we should have just driven the extra 30 min ourselves. However, we had a neat surprise to have an old family friend as our ambulance medic. We are grateful for the care we received and the safe ride.

Millie was admitted needing platelets. That has consistently perked her up after each transfusion. This afternoon a few of her siblings arrived to visit. She has been out of bed, down to the day room, and playing the games with us. Now she’s eating almost a whole sandwich and watching a movie.

Shout out the best friends we could have. Jason N Corine showed up with a full steak dinner from Cattleman’s, real dishes, table cloth, napkins, even roses 🌹 🌹 to help us celebrate our anniversary. We couldn’t ask for better friends. You always have our back. Thank you! Love you both 🥰

Going HOME!

 

Jul 5, 2019, 12:39 PM

July 5th is a great day. It’s my baby sisters birthday, the day before our 29th Anniversary & Millie is headed HOME!! She got out of the truck and headed to her swing.  She missed being at home so much!

Lay with me Mama

 

One thing being in the hospital has done is mess with our schedule. Millie is very cranky and often uncooperative. Her favorite word right now is “No!” She is hesitate to let us (anyone) touch her. She is grumpy and bosses us all around. However last night before I left for the house, she told me to lay with her. My heart melts it was so good to snuggle my baby again.

Happy Forth of July 🧨 Millie was surprised with a sweet Red, White, & Blue gift basket. A pinwheel, flag, cute hat, candy, and poppers. Sister got out the red “Poprocks” to share with Millie. That was a new experience for our feisty girl. The last few pictures are her special things in her room. Her Bear and Monkey from her grandmas. Pink Blankie...no other will do. Her balloons, flowers, and cards from her siblings. Her “Daniel Tiger” poster from a friend. These things bring her great joy 😊 Prayers for today: 🔹Peace, she is extremely agitated 🔹red rash - medicine reaction? 🔹wisdom to discern normal chemo reaction verses reaction to something else 🔹sleep- her schedule is disrupted and she hasn’t taken a nap all day.

Bubbles with Big Brother Josh

 

Sorry the video is sideways, it won’t let me adjust it. Here you see our precious treasure in action. Millie has a great time playing with daddy and brother tonight. They blew bubbles for over 10 min tonight. Praises: 💕Brother Josh brought doughnuts and she ATE them. Nose tube avoided at least for today. 💕 her swelling is decreasing. 💕she sat up in bed today numerous times. Prayers: 🔹 swelling to go down 🔹blood counts to level off 🔹tumors to shrink. Thank you for following Millie’s Miracle and praying for us all.

Chemo #5 of Rd 1 is DONE...

 

Chemo #5 done: At this point we should go home...BUT we are not. 🔹She will not eat more than a bite or two. They plan to do a nose feeding tube. IV nutrition is not a good fit for her due to the compromised liver. 🔹She is still swollen. 🔹Her blood counts were low today so we had a transfusion and platelets. 🔹She has ran a fever 3 evenings in a row. There are other things that come up during the day, but these are the main ones. Daddy has been preparing our house for that day she can be released. We all look forward to that day! 💕💕Many of you are still asking about needs. For today they have all been met. You guys are so awesome! Our yard has been mown, our well fixed, our kids cared for, our food, paper goods, and groceries purchased. We have been prayed for, prayed with, prayed over. You guys have brought things to keep our minds and hands busy. Things to entertain Millie, things to make her more comfortable, gift cards and cash to meet future needs. You’ve sewn, drawn, and mailed her sweet gifts with her favorite characters on it. You’ve created a cool pin in her honor. IT IS SO AWESOME to know that as scary as this is, as unknown as the future is, we are walking surrounded with a multitude of believers who are willing to hold us up when we are weary. Thank you...each and every one of you! 💕💕

Chemo #4/Round 1, along with hot salsa!

 

Chemo #4:

Millie has eaten! She asked for Chips and Salsa (from Chelinos) She loved it and it was hot! The nurses said Chemo makes all food taste bland so these kids want it spicy 🌶 Today was a good day. She played with Josh, FaceTimed her niece and sister-in-law. She even let me lay in her bed with her(she’s not letting anyone on the bed).

The plan is to finish Chemo #5 on Tuesday. After that we would go home for awhile IF:
🔹she is eating
🔹she is going potty regularly
🔹her belly swelling goes down

Millie’s long term plan is to do cycles of chemo every few weeks, then surgery, then a self donated stem cell transplant, and immunotherapy. Her treatment plan will take a full year to complete.
Millie’s cancer is the most aggressive, unfavorable for this type in our understanding. She has a long hard fight ahead of her. She’s so spunky that we know with God on her team and so many praying for her, SHE CAN BEAT THIS! 💕💕

💕picture is Millie and grandma in vacation in May💕

SJ's 8th Birthday

 

Today Millie helped her sister “SJ” celebrate her 8th birthday with a cake and ice cream hospital party. The hospital was so sweet to set up a room, decorate, and provide gifts to help this day be fun for big sister. Chemo Day 3: 🔹mild nausea has set in. 🔹no appetite (when with mom) 🔹fever returned She’s fighting tonight to heal. Prayer request: 🔹Eat! 🔹belly swelling to reduce Thank you for praying 💕

Chemo Day 2 of Round 1

 

Praise:
Day 1 Chemo went well.
Millie has no nausea or vomiting.
She doesn’t seem to be in pain.

Prayers for today:
🙏🏻Chemo round 2
🙏🏻Lack of Appetite
🙏🏻belly swelling to resolve
🙏🏻Biopsy wound site to heal

💕Millie riding her bike in May with big sister💕 I love her curly crazy hair 💕

Playing playdoh with brother Joshua, eating yet another frozen burrito by request, and watching Daniel Tiger. Chemo #2✅

Praises from the PICU and Official Diagnosis

 

PRAYER CHANGES THINGS!

While she is still bleeding some, it has slowed way down! Thank you for praying!!!!

Praises from the PICU:
❤️ Bleeding is minimal and slow
❤️She has slept most of the night
❤️She was finally allowed a clear liquid to eat.
❤️ David and I have been able to trade off sleeping on a cot or chair

'24 hours of God’s miracles.  She has begged for a frozen burrito and juice.  Today she got it!!!  

🔹We might leave the ICU today.  

🔹We plan to start Chemo today.

Life will get harder before it gets better but she has spunk AND God on her side.  

Thank you Jesus for today with our Millie 💕'

Update: Neuroblastoma
In liver and around kidney
NOT in bone Marrow

Not fighting Cancer for today

 

Today has been a rough day.

Overnight Millie’s belly started swelling. They treated her with Lasix for the retained fluid. They also realized she is bleeding internally from her biopsy of the liver. Because liver bleeds are extremely difficult to get a handle on, they have moved us into ICU. Finally, the biopsy site on the skin is bleeding and we can not get it stopped. At this point they are slow seeping bleeds not fast pulsing bleeds. That is a plus. They have a surgeon on call if we have to go into the OR.

Today we are not fighting cancer. Today we are solely worried about bleeding. Tomorrow we go back to cancer fighting...

Pray, pray, pray....Millie NEEDS YOU ALL🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

No confirmation yet...

 

I know many of you are looking for an update tonight. We did not get any results today. We did have a scan that causes any tumors in the body to glow bright. This helps them know all the affected areas. We are hoping all tests will come in tomorrow.

Prayer request tonight:
🔹She is very uncomfortable. She’s retaining fluid making it hard to relax.

This picture is Millie and Mommy at the Grand Canyon May 2019. How can that be just 3 weeks ago?

Update

 The three procedures today were:

💜 A liver biopsy
💜 A central line placed
💜 A Bone Marrow Aspiration

Each procedure went well. They think that they got the information they need. They will not give the official diagnosis until tomorrow afternoon.

We do know Millie has Stage IV Cancer meaning it has metastasized to other organs. We are suspecting it is in her bone marrow. We do not know what variety it is yet although they have a strong suspicion.

There are no words to say to share our grief, our disbelief that this could happen, or our fear for her. However we know that this didn’t surprise God. He knows and loves her more than we do. Keep praying...💕 It gives us hope.

Operating Room Visit

 

Here’s a picture of Millie on our farm from earlier this spring. She loves to play in the yard with her brother and sister. She enjoys her swing, farm animals, tricycle, and swimming in the horse trough. All the things a little girl should be doing this summer. We would both rather be home today...

Today is official diagnosis day. We have had a new IV and jammies this morning. Now we are waiting to go to the OR. They have three procedures scheduled while she is under anesthesia this morning. The most critical is to do a biopsy of the mass. This will give us a name to what we are fighting. We do not know the timing of the results but hope it will be quickly.

🧸 pray that the results are the most favorable
🧸 pray that God COMPLETELY removes this
🧸 pray that her body is strong enough to fight
🧸 pray for us, her family, to support her, love her, help her understand this crazy path we are on. We feel so helpless and heartbroken. 💔

Testing Begins

 

June 24:

Millie had a good night. She slept well. The blood transfusion yesterday seemed to help her with her appetite and resting.
This morning we had an early start with a sedated cat scan. She did great. We will be waiting for test results today with no idea when they will arrive.

Pray that the results are favorable. Our biggest hope and prayer is that this is something easily fixed or that GOD would miraculously remove the problem.
We serve a POWERFUL GOD who can heal our precious baby 
~David and Courtney

Admission Day for Millie

 

June 23, 2019 - Millie has been admitted this morning. Today is a day of rest and her first blood transfusion in preparation for tomorrow. Thank you for praying over our sweet girl today. So many people and their churches are lifting her name to Jesus.  Each one is so completely appreciated.