Since the very beginning we have been slow to speak and quick to pray.
This has changed recently as I am just tired.
In the last three weeks we have added so much to our plates....
-Ambee started preschool
-Avery and Ambee started dance
-Ambee started speech
-Mommy's school year started with 50 kids and 4 new employees (last year there we 4 students)
-Daddy's work has had an uptic with the business travel season starting up again and a new quarter to focus on and a work trip
-Avery is seeing OT, PT and speech more regularly just because of the point of treatment she is in not because she 'needs it'
This mama is just tired!!
And so although I never cease to pray and have been praying more lately, my words have been flowing more freely than they should. And sadly they haven't been speaking God's truth but repeating the words of the medical profession. Our normal doctors just tell us the treatment so we can plan, our new doctors we have been seeing as the clinic is growing tells us all the side effects and what to expect as well. I have been repeating their expectations that Avery will be sick, this last push will be intense, blah blah blah.
Sadly, I have opened a door thag needs to be shut.
Words are powerful! Expectations are powerful. I am working to change my mind, words and expectations. I will be slow to speak and quick to pray.
That being said here's an update on the last few weeks...
Two weeks ago, we showed up to the clinic in great spirits ready to start this last round of Delay Intenscification treatment. We were prepared for a long stay. Turns out we were sent up 30 minutes later as Avery's blood work showed she needed more time to recover from treatment and the cold she was fighting off before we could start this new protocol. Home we went a little bewildered but happy to have a break.
Last week we went back to the clinic on Friday after hearing the news on Wednesday's blood draw showing Avery's numbers had recovered! Avery did amazing with her spinal tap and chemo injection. She then got an IVIG transfusion. These are antibodies taken out of donors bloods and mixed together the help boost Avery's immune system. I don't fully understand what it is other than a blood type product that helps specific parts of her blood become stronger to fight off infections. Like the doctors warned Avery spent the better part of three days needing to be cuddled on the couch after this transfusion. There were so many tears and complaints and requests for more snuggles.
Next the high dose steroids kicked in and Avery turned into she hulk! Hungry, full of emotions and very short tempered. Bonus that she would randomly wake up in the middle of the night and just be awake.
Last week was not fun and I spent the majority of the week being very angry. I was angry that Avery is healed and yet we have to keep giving her medicine and treatment. I was angry that the treatment is what is making her so miserable. I was angry that I couldn't do anything about it. I was angry that I was so tired.
Every time we go to the clinic I spend a significant amount of time preparing in prayer and worship. I tell Alex that I am preparing for battle. I always feel peace going in. Except this week. I didn't prepare like I should have and went in with this annoyed to be here attitude. Things went fine at yesterdays appointment but they definitely didn't go as miraculously as normal. The lab took forever to get results back and we couldn't start treatment until labs were back. The pharmacy took forever to make the chemo. Avery fell asleep near the end of the appointment so she only got a 40 min nap when she typically takes a 2+ hour nap. An appointment that could have been done in an hour was tripled to take 3 hours. Nothing went wrong or had complications, everything was just a little off.
Last night we came home and was putting Avery to bed when she threw up all over me. She continued to throw up every 30 mins for 2 hours. We gave her every medication we had to combat nausea. I felt so bad!! After the second time of being covered in throw up, I had to take a shower to get cleaned up. I stopped to pray and reflect. Very rarely does Avery get sick from chemo and her recovery meds always work if she does happen to get sick. This time nothing was working and I wanted to know why, Avery had had this course of treatment many times and never gets sick. So this was unexpected also very unexpected that we couldn't get her to stop. While in the shower I heard a small voice that pointed out my actions, expectations and words as of late. I repented, prayed and changed my expectations. Avery ended up sleeping through the night and has been just fine today.
I remember one hospital stay, I also had this annoyance feeling. Avery's numbers wouldn't budge and I just kept getting angrier and angrier. Once I switched my feelings to that of gratitude and praise her numbers instantly went up and we got out of the hospital 2 days later to the doctors shock and surprise. We spent an extra week in the hospital because of my actions.
This whole experience has been one of understanding and learning about God's love and promises for us but also about our own abilities to accept or reject those promises and love. I did a lot of growing last night. Today I woke up with a grateful heart and one of a prayer warrior. Avery does not need to have side effects because of the medicine we are giving her. She is a child of God and we stand on the knowledge of her healing.
Now on a happier note, we got our end of treatment date! November 3rd, 2024 can not come fast enough!! Until then we will keep praying and knowing that this treatment can not effect Avery negatively now or in the future!
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