Haylie update - May 15
Life has its up and downs and these last few weeks have been just that. We could use some prayers. I have been wanting to give an update for a couple of weeks, but honestly, I just couldn’t, I have been both physically and emotionally drained.
Haylie went back to school on April 15th and had a great week. She was feeling really good, riding her bike all over the neighborhood, running and playing in the back yard and my heart was so excited. It was like our life was returning to normal. She was almost back to being a normal kid. And then she went in for her monthly round of chemo and steroids and everything changed.
I was unaware of her complete treatment plan in maintenance. The doctors and nurses celebrated with us when we entered maintenance and I was under the impression that life would be almost back to normal. I was told she would have her monthly vincristine and daily chemo pills at home and that was it. Then I learned she would also need 5 straight days of nelarabine (another chemo) every 3 months. Ok, not fun, but we can deal with it. Then for her last round of chemo, her doctor told me that she was going to switch her steroid and put her back on dexamethezone once a month because of new research for t-cell. For some reason, Haylie’s body does NOT react well with dexamethazone. Easter Sunday began her crash. Oh my heart hurt to see her struggle and in such pain after feeling so good and knowing that she would now have to go through this again every 4 weeks for the next year and a half.
After talking to several other moms we have learned a lot about the reality of steroid week. The problem is that most of the kids on their steroids were down for one week and bounce back...only Haylie still hasn’t bounced back. This is week 4 for her and she is just now getting back on her feet. She will have a good day, and then have 4 or 5 terrible days. She wanted to go back to school so badly to see her friends. She actually went 2 days, only for me to get called by her teacher and the school nurse that she totally crashed and can’t walk and I need to get her. She started getting terrible headaches and her leg muscles and knees would totally give out. I have had to carry her up and down the stairs for a couple of weeks. The doctors are confused and we have been back to the hospital 3 times for tests only to still be guessing. It was so hard to have to put her back in her wheelchair. Her body is exhausted and she sleeps more than I’ve ever seen her sleep. She crawled to the top of the stairs the other day, only to be so exhausted that she slept on the floor at the top of the stairs with her legs still dangling off the last 2 steps.
She was so determined to go back to school. She has gotten out of bed a few times and tried to get dressed and fell down several times only to realize that she would not make it back another day. It just broke my heart to see her in tears and there was nothing I could do to help her.
I’ll be honest, I was upset when I found out that we would have one week of every month totally disrupted by steroids. Now, I will be thrilled if it would only be one week, since we are starting week 4 now. Maybe I just needed perspective. I heard a great sermon at church last week. It talked about the term laying our burdens down and what it referenced in the Bible. Ancient caravans traveled on camels and they would place the heavy burden on one camel. At the end of the journey, the camel would lay down and roll the burden off his back. That is what we need to do. I think I got complacent when Haylie was doing so much better, thinking we got this. The truth is, we need Christ every. single. day. not just on the hard days. So I’m laying my burden down, because I know Christ can carry it so much better than I can. The sermon also talked about Him being our shepherd. We are his sheep and we aren’t designed to carry heavy burdens. No one ever heard of a pack sheep! So if you are carrying a burden, lay it down and give it to Jesus. He is far more capable than us.
We were able to make it to church this Sunday and the most precious couple prayed for Haylie. They increased my faith and strengthen my heart. I don’t know why Haylie’s body has had such a bad reaction these past few weeks. The doctors don’t know why either, but we are standing in faith that God has got this so I’m trusting that this next round of chemo will go much better.
The last 2 days have been good days! She has been able to walk up the stairs by herself and is starting to regain her energy. She was supposed to start the next round of chemo and steroids tomorrow, but we have pushed it back one week. Please pray that she continues to improve and the next round of chemo and steroids don’t effect her like before. We really want her to have a semi normal summer this year.
Fear not, for I am with you; do not be dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous hand. Isaiah 41:10
#HealingForHaylie
Life has its up and downs and these last few weeks have been just that. We could use some prayers. I have been wanting to give an update for a couple of weeks, but honestly, I just couldn’t, I have been both physically and emotionally drained.
Haylie went back to school on April 15th and had a great week. She was feeling really good, riding her bike all over the neighborhood, running and playing in the back yard and my heart was so excited. It was like our life was returning to normal. She was almost back to being a normal kid. And then she went in for her monthly round of chemo and steroids and everything changed.
I was unaware of her complete treatment plan in maintenance. The doctors and nurses celebrated with us when we entered maintenance and I was under the impression that life would be almost back to normal. I was told she would have her monthly vincristine and daily chemo pills at home and that was it. Then I learned she would also need 5 straight days of nelarabine (another chemo) every 3 months. Ok, not fun, but we can deal with it. Then for her last round of chemo, her doctor told me that she was going to switch her steroid and put her back on dexamethezone once a month because of new research for t-cell. For some reason, Haylie’s body does NOT react well with dexamethazone. Easter Sunday began her crash. Oh my heart hurt to see her struggle and in such pain after feeling so good and knowing that she would now have to go through this again every 4 weeks for the next year and a half.
After talking to several other moms we have learned a lot about the reality of steroid week. The problem is that most of the kids on their steroids were down for one week and bounce back...only Haylie still hasn’t bounced back. This is week 4 for her and she is just now getting back on her feet. She will have a good day, and then have 4 or 5 terrible days. She wanted to go back to school so badly to see her friends. She actually went 2 days, only for me to get called by her teacher and the school nurse that she totally crashed and can’t walk and I need to get her. She started getting terrible headaches and her leg muscles and knees would totally give out. I have had to carry her up and down the stairs for a couple of weeks. The doctors are confused and we have been back to the hospital 3 times for tests only to still be guessing. It was so hard to have to put her back in her wheelchair. Her body is exhausted and she sleeps more than I’ve ever seen her sleep. She crawled to the top of the stairs the other day, only to be so exhausted that she slept on the floor at the top of the stairs with her legs still dangling off the last 2 steps.
She was so determined to go back to school. She has gotten out of bed a few times and tried to get dressed and fell down several times only to realize that she would not make it back another day. It just broke my heart to see her in tears and there was nothing I could do to help her.
I’ll be honest, I was upset when I found out that we would have one week of every month totally disrupted by steroids. Now, I will be thrilled if it would only be one week, since we are starting week 4 now. Maybe I just needed perspective. I heard a great sermon at church last week. It talked about the term laying our burdens down and what it referenced in the Bible. Ancient caravans traveled on camels and they would place the heavy burden on one camel. At the end of the journey, the camel would lay down and roll the burden off his back. That is what we need to do. I think I got complacent when Haylie was doing so much better, thinking we got this. The truth is, we need Christ every. single. day. not just on the hard days. So I’m laying my burden down, because I know Christ can carry it so much better than I can. The sermon also talked about Him being our shepherd. We are his sheep and we aren’t designed to carry heavy burdens. No one ever heard of a pack sheep! So if you are carrying a burden, lay it down and give it to Jesus. He is far more capable than us.
We were able to make it to church this Sunday and the most precious couple prayed for Haylie. They increased my faith and strengthen my heart. I don’t know why Haylie’s body has had such a bad reaction these past few weeks. The doctors don’t know why either, but we are standing in faith that God has got this so I’m trusting that this next round of chemo will go much better.
The last 2 days have been good days! She has been able to walk up the stairs by herself and is starting to regain her energy. She was supposed to start the next round of chemo and steroids tomorrow, but we have pushed it back one week. Please pray that she continues to improve and the next round of chemo and steroids don’t effect her like before. We really want her to have a semi normal summer this year.
Fear not, for I am with you; do not be dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous hand. Isaiah 41:10
#HealingForHaylie
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| Getting a checkup |
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| She was supposed to be working on schoolwork and she crawled under the table and fell asleep |
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| Peanut always makes her feel better |
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