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Haylie update - June 24

Today Haylie finished her last day of her 5 days of her hospital chemo. Yay! We are so thankful to be done with this round. It started out a little shaky when the nurse missed her port on the first day...again. That is the 5th time that her port was missed. 🤦🏽‍♀️. Thankfully another one of our favorite nurses stepped in and accessed it right away. Haylie decided to leave her port in because she was pretty sore for the first 4 days. This proved to be a challenge every night when she wanted it out to sleep, but turned into a positive every morning when she didn’t have to be accessed again and again.

Her body continues to get stronger! She has tolerated the nelarabine (chemo) really well with round. Thank you everyone for the prayers. Her bloodwork looked great on Thur. The good news is she won’t have to take the steroids this month because she had the 5 straight days of chemo. We are hopeful that this will be her best feeling month yet and we can really enjoy summer.

She started physical therapy last Wednesday to try and get some of her strength back. She is still struggling in some areas, but I can’t tell you how much better she is today than 2 months ago. God is good and continues to go before us. She has taught me so much. I think I’ve learned more this year about life than in my last 15. She wanted to eat dinner on the fancy China and I figured why not! Before, I probably would have said no because I didn’t want to wash it all and I would have missed a fun family memory. Better enjoy some of the fun things in life now so you don’t look back and regret not really living. Make time for family and friends and tell people how much you love and appreciate them.

Facebook has done a great job of reminding me of what was happening everyday last year. A year ago I was rejoicing that I finally was able to get back to the hospital after being out sick and then having to have my emergency surgery. Man, June was a tough month on us last year.
I was also reminded of the way friends, family and our community loved on us during that time to get us through. We are so incredibly blessed. Thank you everyone for supporting and praying us through our journey. Haylie still has over a year of chemo treatments left, but I continue to stand in awe as I look back and see how far we have come.
#HealingForHaylie

Getting started on day 1 this round

Finishing day 2

Our sterile face

Our little helper

Dr Leavy!

Working on her balance

Eating dinner on the fancy China just for fun

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Haylie update - June 7

It’s been a great first week of summer. Huge praises that Haylie is doing so much better this month! We were able to take a trip to the zoo on Wednesday and went swimming today. She continues to get stronger everyday and we are back to doing almost normal stuff. This is so encouraging to me after such a rough month last month.

Since it has been a year since Haylie’s diagnosis, Facebook pops up memories from last year and it’s pretty emotional to be reminded of the battles we were fighting at that time. I took a screen shot of today’s memory and attached it in the pictures. I didn’t realize that Haylie wasn’t allowed to lay flat for 7 days because of the mass around her heart when we were first admitted. The doctors were worried she wouldn’t be able to breathe and could die. The second night we were in the ICU she kept setting off the oxygen monitor and we were up most of the night trying to make sure she could breathe. Praise God we have come so far! I also was reminded of the wonderful news of the pathology report results saying their was no cancer cells in her spinal fluid after drs had already told us cancer cells were present in the initial computer report. It had been a false positive and I was so thankful. I believe God was already beginning a healing work in her body. We have so much to be thankful for. Thank you all for the continued prayers. God is good and is answering so many of them right now.

#HealingForHaylie

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Haylie update - May 31

Today officially marks one year since Haylie’s leukemia diagnosis. Wow, what a year it has been. I took a picture in the hospital that first night because I wanted to remember where we started on day 1 of our journey. As I look back, I am blown away by all that God has done over this year for us. In some ways it feels like forever, and in others it feels like yesterday.

Today we decided to celebrate instead of mourn to thank God for how far we have come. We still have a long road ahead of us, but as I look back to this time last year, rushing to the ER with the news that Haylie was critical and then the really rough night in the ICU with so many questions and so much uncertainty, I am able to see God’s faithfulness in all of it. He has gone before us every step of the way. It hasn’t been easy, but God has been with us every single step of the way. Only He could give us peace and hope in the midst of some pretty tough storms.

Today didn’t start out quite like we had planned, she had a slight fever, so that ruined any plans of getting to go to the last day of school. It has been a bumpy week since Haylie’s spinal tap and last round of chemo and steroids. The steroid round in April was just terrible. It kicked us hard and never let up. I had been so worried that this round might be just as bad, but, I am so happy to say, it has been so much better! Praise God. Thank you everyone for the prayers! She had the usual sleepless nights while on them, but coming off the steroids has been so so so much better this time. She has been tired, but hasn’t had the major crash like last time. She can still walk up and down the stairs and is gaining energy instead of losing it this time. Hallelujah!

Her fever finally broke this afternoon and we were able to go to the ropes course at the Great Wolf Lodge. She conquered her fear of heights and had a lot of fun. She eventually crashed and Brennen was an awesome brother and helped lead her down. It gave the supervisors working there a bit of a scare when we finally got her down, but she recovered pretty quick. They scolded me for not telling them of her condition, but we all survived so I say it was a win.

Later we made it to an end of school party where she got to see several of her friends. That was certainly a highlight! She has missed being around friends more than anything else with this cancer battle. When we got home, we were surprised by a giant summer fun box that the GLOW girls put together. They are all so amazing and encouraging. We are so thankful for all of them, especially, Heather Lairsen, and for her amazing heart leading these girls.

We ended the night by going to eat at Texas Roadhouse as a family to celebrate. I’m so thankful for the family God has blessed me with, especially my amazing husband who is such a strong support for me. ❤️ I can’t imagine going through without him.

This year has challenged our family, tested us, and grown us in so many ways. I know we have a much better perspective on life, are more caring, are more generous because of the unbelievable generosity we have received from so many others, have more faith and have become stronger. We are beyond blessed. We can never thank everyone enough that has helped us on our journey so far. Thank you from the bottom of our hearts. May God bless you as much as you have blessed us. We are excited to see what good things God has in store for us over the next year.
#HealingForHaylie

In the ER and just got the diagnosis. 😕

Brennen just arrived from baseball practice where he was given a trophy from their tournament win the week before. (Normally we don’t carry around trophies) 🤣

My sister and her family got to the hospital and posed in our day 1 photo with us.

On her way to get the PICC line placed with no anesthesia because of the giant cancer mass around her heart.

1 year later...her hair is really starting to grow back in.

Trying out the ropes course

Made it to the highest level!

Swim party with friends!

Fun group of girls.

Our summer fun surprise box from GLOW girls

Celebration dinner! Just sad we didn’t get her awesome Daddy, Michael, and Brennen in this picture, too.