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
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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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