And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Thursday, January 10, 2019

#HealingForHaylie-Post 77

This afternoon started out a little rough but turned into a major highlight! Haylie was chosen to be a model in the Children’s Cancer Fund Gala in April and today was photo shoot day! We came straight down to the photo shoot from chemo. She was super excited to meet Troy Aikman and Roger Staubach. She even asked to take a selfie with them and all the news crews loved it so look for her on the news tonight at 10!

She even made the Children’s Hospital Facebook post!

Haylie’s selfie!

#HealingForHaylie-Post 76

Haylie update - Jan 9
It’s been a pretty good week. Haylie started her nelarabine treatments on Monday so we have to be at the hospital all week. It’s 5 consecutive days of infusions so here we are on day 3. The first day, Monday, went well. Tuesday she was nauseous and threw up quite a bit. Today has been rough. She opted to get her port accessed every day rather than keeping it in all week like in the past. The nurse yesterday pushed so hard I thought she might break Haylie’s sternum, so Haylie has been extremely sore. I knew it would be tough today because of her soreness, but unfortunately the nurse today missed her port. 🤦🏽‍♀️. Haylie usually takes it like a champ so I knew when she was writhing in pain something wasn’t right. The nurse kept moving the needle around (3 times) trying to get the port. I asked the nurse if she needed to take it out and try again but she kept saying everything was right. It wasn’t until she put the flush in that Haylie started yelling that it was burning that the nurse finally took it out and admitted she missed. 🙁. So...we had to try again. We requested one of Haylie’s favorite nurses from the clinic who came over and got it first try. Thank you nurse Jennifer!
Today was a pretty big day because we have a photo shoot with the hospital at 3:00. We had allowed ourselves extra time but it will be so close to see if we make it now that we were set back with the port. 😬. Haylie has decided to leave the port in because it hurts so much. Bummer because today was the one day we will be taking pictures. Oh well, it will be ok.
Update part 2
We were late, but made it to the photo shoot! She also decided to have the port taken out and endure the pain again tomorrow so the pictures wouldn’t show her port. The photo shoot was really fun and it turned her bad day into something really special. I’ll post her photo shoot pictures in the next post. 😉

We ran into her friend, Toni, from camp.

This was right after we had to remove the missed port. 😢

Very painful. Bless her.

Posing for the photo shoot.

Tuesday, January 1, 2019

#HealingForHaylie-Post 75

Haylie update- Dec 31

We have had a few ups and downs since my last update, but mostly ups. We had a great Christmas with family and overall Haylie has done fantastic considering all things. She wanted two things for Christmas, to have hair and to not spend it in the hospital. We got both, so we are extremely thankful.
She was back on steroids for 7 more days, and it was a little rough, but her body handled them far better than last time. She took her last high dose steroid on Friday and we did rejoice. She had a checkup appointment on Thursday and her levels came back great! Even better than we were expecting. Her ANC was 3220! God is good! Because it had been so low over Christmas our doctor told us we needed to stay home and not go out anywhere. After staying home for a week, she was ready to get out so we celebrated by going to the Cheesecake Factory. She had been craving the Cheesecake Factory for days and it was great to finally get to go. We tried to go on Thursday night, but she crashed and was just too tired so Haylie and I got to go have a mommy/daughter day on Friday. The steroids make her so nothing I’ve ever seen. She seems to only think of food. She would wake up in the middle of the night with stomach pains begging for food. One night at 3am she asked me how early she could get up for breakfast. 😂. When she eats one meal, she is constantly asking what we are having for the next meal and when it will be. Usually she asks this about 20 mins after eating the previous meal. 😳. Her texts are so funny because they are almost always about food. I’m going to include a screen shot of the last text. It just cracks me up. While at the Cheesecake Factory she was eating her food and she told me that “Happiness comes on a plate when you are on steroids.” This girl, I love her sense of humor.

Yesterday was a little rough. She is coming off the steroids and her whole body just hurts...really bad. I can’t even put my hand on her back or shoulders to hug her without her being in pain. At least this time we know what is happening. Last time I didn’t understand what was going on and why she was in so much pain. While I still don’t like it, I know that it must run its course and she will be ok. It lasted about 3 days last time so we have 2 days left, maybe less. She was running a slight fever yesterday which scared me. Thank you to all our prayer warriors would began to pray. Her fever broke, so we didn’t have to head back to the hospital. Thank you Jesus!

Her hair began to fall out again so that has been a little tough for her. She kept it far longer than the doctors said she would so we are thankful for the extra time with hair. We know that it will come back, but it is hard because she was just getting her confidence up to go out to places and not be starred at. It’s tough as a mom because I see the people look at her too. They don’t mean it in a bad way, but it still hurts her to stand out as so different. She will be a stronger person for this in the long run, but it’s still hard right now.

As we end 2018, we have so much to be thankful for. I look back and realize 2018 was a good year. It certainly wasn’t an easy one, but I can see so much growth in all of our family. I know I’m a stronger person now. My eyes have been opened to the bigger picture. I don’t let all the little things bother me so much anymore. I don’t take things for granted anymore. I’m more appreciative of people and all that they have done for us. We have such amazing friends and family. My faith has been strengthened and I’ve seen how God has taken care of us and carried us along the way. He is a faithful God and has never left me but has held me tighter this year. I trust Him even more now. I’m looking forward to what 2019 and God has in store for us. Many blessings to you all. May God’s favor bless you in this next year.
Happiness comes on a plate when you are on steroids. -Haylie 🤣

Monday, December 24, 2018

#HealingForHaylie-Post 74

Haylie update - Dec 22

Just wanted to give another update on how things are going this round. I’m so happy to report that she is doing so much better! The first week of delayed intensification really kicked us in the teeth. We found out that it was actually the steroids that were making her feel just awful. She was on them for 7 days and off for 7 days. By the end of the 7 days off she was feeling almost back to normal and getting her energy back. She was also sleeping through the night again which was an incredible blessing for both of us. She had to go back in for more chemo meds on Friday, vincristine and doxorubicin. The doctors have told us that her hair would all fall out again after the first dose, but she just had the third dose and it hasn’t fallen out yet. Yay! She told me all she wanted for Christmas this year was her hair. I know we still have a few days until Christmas, but I really think she will keep her hair for Christmas. It just might be our Christmas miracle this year. 

We got her labs back on Friday, and they weren’t quite what we were hoping for. Her levels have began to drop with all the chemo. On Monday, her ANC was over 2200. Yesterday, they had dropped to 720. We figured they have been dropping about 300 points a day. If she drops below 500 she is considered at risk and we aren’t allowed to go out in public again. So we will be home bound until her levels come back up. Her doctor ok’d her going to her friends party but told us no where else. We left the hospital and were able to make it to her sweet friend Morgan’s Christmas party where she was able to see her so many of her friends. It made her day! She was so determined to make it to that party, even though she felt awful and nauseous after her chemo. It’s amazing what you can will your body to do.

Well, we kind of broke the rules of staying home today since she was feeling so good. We drove to my Aunt Melloy’s Christmas party and we were able to see all my cousins that I haven’t seen in so long. It felt like Christmas again. It was good for the soul. Sometimes I think the reward we get from being around friends and loved ones helps more than the risk we take to be there.

On Friday, she also started the steroids again. We were expecting to get knocked down pretty hard again, but so far she is doing great. We are praying the next 6 days go just as well as she continues the steroids. We are thankful that this will be the last time she must take this high of a dose in her treatment. The steroids are designed to get her blood and ANC levels up. Praying they do their job without the side effects this time. She continues to amaze me everyday. I included some pictures of touching moments this week. I love Brennen giving her a hug goodnight to make her feel better and Peanut snuggled next to her in bed. Those two are inseparable.

Thanks for all the continued prayers. Love you all.

Taking it like a champ.

Getting chemo...

About to get her port accessed.

Christmas party!

Getting sweet hugs from Brennen to make her feel better.

Found Haylie and Peanut both asleep.

Friday, December 14, 2018

#HealingForHaylie-Post 73

Haylie update - Dec 13

I am sitting in Haylie’s room as she tries to sleep and I finally have a chance to give an update. I have to be honest. It has been a really tough week. Much worse than I was expecting. It is so hard to watch her go through the pain and side effects of the really strong chemo. She told me that she hates chemo worse than cancer. She started the last bad phase of her treatment last Thursday. She was just so sick by that afternoon. Saturday and Sunday she was just so weak that we couldn’t go anywhere. We missed all the events we had hoped to make, the Nutcracker, the baseball Christmas party and church.

Monday was by far the toughest day for me. We had to go back in for her next chemo shot and Haylie had simply had enough. She was laying on the couch and I told her we had to get dressed to go and she looked me in the eyes and simply said NO. I told her I know she didn’t feel good, but we had to get ready so we aren’t late and she just said NO again. Y’all it was such a struggle. She had reached her limit and frankly I was close to the line myself. It is so hard to force your child to get dressed and get in the car to go back to the hospital to get more pokes and shots and medicine that have awful side effects.

We made it, but just barely. I just had to sit down and pray for strength. I ended up giving her a long speech about how marathon runners say the last few miles are the hardest. We are in the last few miles and they are proving to be the hardest. We are almost there, we can’t give up now because we are so close to the finish line. I think I was telling it to myself as much as to her, but it worked. She got up, got dressed and in the car. She really amazes me. She doesn’t even realize how strong she is becoming.

While we were in the hospital waiting room I nearly lost it while watching The Incredibles. Seriously, Disney’s the Incredibles. It was the scene where the Mom was flying the plane over the ocean and they were being shot down by missiles. I could see the desperation on her face and hear it in her voice and I felt the same way at that moment. The enemy was attacking her, just like I felt he was attacking me. At the last minute, the Mom aborts the cockpit and rushes to shield her children as the plane explodes. I knew that a mother would do almost anything to protect her children and she was helpless in that moment. I felt so helpless too. I felt there was nothing I could do to make Haylie feel better as she laid there in pain about to get more. When the Incredibles Mom was yelling at her kids to pull it together, I felt like she was talking directly to me. It was all I could do to not burst into tears. I guess Haylie and I were both emotionally drained after being so sick over the weekend. We are running on fumes again, getting very little sleep at night because she is in such pain. I think I had about 4 hours combined sleep that night and not much more since then. I feel like we are back in the newborn stage. We got through the sleep deprivation then, and God will get us through this as well.

The rest of the week has been about the same. She is just so weak, but getting stronger. I found out it is the high dose steroids that are making her body ache so badly. She finished the last dose for a few days today so I’m hopeful that she will feel better tomorrow. She does have Peanut by her side to make her feel better.

We go back to the hospital in the morning for another round of the bad stuff. 😩. We could certainly use your prayers. I plan on celebrating the end of this phase in a big way. It will be a huge accomplishment for all of us. The harder the challenge, the greater the victory. We are almost there...8 weeks to go.

Friday, December 7, 2018

#HealingForHaylie-Post 72

Haylie update - Dec 6

I’ve kind of taken a Facebook break for the last 2 weeks. Today we are back in the hospital to start the 4th phase of treatment, delayed intensification. We are sitting here waiting for her blood counts before she can get her spinal tap and begin chemo. This phase will be a lot more intense than the last one so we are trying to prepare ourselves. We tried to get all the fun Christmas stuff done early while we were off for the 2 weeks, in case Haylie isn’t able to get out much in the coming weeks. We had fun, but man did those 2 weeks go by fast. I’m thankful that yesterday Haylie’s sweet teacher opened her classroom for Haylie to get to have lunch with some of her friends at school. It meant so much for Haylie to see her friends again. we also had a chance to go see ICE and get our pictures with Santa. The kids also wanted to have a fancy dinner on our China so we did. They set everything up and we decided we should celebrate more often. 

Although the timing isn’t the best for this phase (being over Christmas) we are excited that this is the last bad phase. We even got a calendar with her last Erwinaze shot listed. That is very exciting to us. It is still 8 weeks away, but we are thankful.

I was trying to text my parents and Michael’s parents the other day when a text message popped up that I never sent. It was a great reminder for me that I needed to see at the time. I was sitting in the ICU and the doctor had just told us how bad Haylie was and how long the treatment would be when I wrote it. It would have been June 1st. It was a lot for me to handle at the time. So much was unknown. I look back now and see how God has gone before us and answered so many desperate prayers. Here is the text message...

“Sometimes I think God is giving me more than I can handle. We just met with oncology. She has T-cell ALL leukemia. It is the worst kind. They have to be way more aggressive with it so she will get much more chemo and drugs to fight it than those patients with the other types. We need prayers and a miracle. We will definitely be in the hospital for at least a month and treatments for min of 2 years. This is a chance for God to show up big.”

God has shown up big for us and has brought us so far. We have so much to be thankful for. Please keep us in your prayers as we begin this next phase. Love you all.

Be strong and courageous. Do not be afraid or troubled for the Lord your God is with you wherever you go. Joshua 1:9