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

Wednesday, October 17, 2018

Rock

Rock...


What comes to mind.  Something firm or solid? Something jagged or rough? A giant boulder?


I ask myself this and as I might have already shared, this most recent hospitalization was different.  Last year, for comparison, was totally unique and nothing like we had ever experienced.  This time was the same, unique and nothing like we have ever experienced.  For some reason, I personally felt stronger last time faced with a life or death situation.  Praise God for His strength!  This time, it was different.  While maybe our situation wasn't life or death, suddenly fear began to set in about what was to lie ahead- what is Princess seized every 10 or 15 minutes and we couldn't stop it.  What would our home life look like? What would the balance of faith, family, work look like? I suddenly became very overwhelmed and could feel myself mentally shutting down and become very narrow focused.


But God....


Two of the most amazing words that we do see time and time again in the Bible.  But God, turned it around and His Word filled my mind and heart.  Psalm 40 began to speak to me almost out loud this morning. 


I waited patiently for the Lord;
    he turned to me and heard my cry.
He lifted me out of the slimy pit,
    out of the mud and mire;
he set my feet on a rock
    and gave me a firm place to stand.



Oh how good!  In the moment of our distress the Lord heard my cry.  We're called to trust Him no matter what.  In the good times and the bad, I will still trust in You!  In in the stillness (irony as Princess' seizures did not allow for stillness yesterday) the Lord heard my cry and put a peace in my soul that said, "I've got this..."  And it was then and there my feet were on Rock.  HE gave me a firm place to stand!

So as for today, we were discharged from the hospital late this morning.  This allowed for us to get Princess to her Neurologist to disconnect her ambulatory EEG and have them begin downloading and interpreting the data.  Nearly 100 "push button" events (seizures that we marked) were noted in the nearly 48 hours of wearing the EEG.  Literally, Princess would seize nearly every 10 minutes or so yesterday, this even after taking a dose of a rescue drug.  It is interesting to note that though she was seizing so frequently, the rescue drug did actually slow things down a tad and even allowed Princess to become more coherent.

Today, has been slightly better.  She seemed to rest last night and then didn't have nearly as many or at least the frequency compared to yesterday.  While we're still not out of the woods, it is comforting to see that things have slowed and we're prayerful that the current trend will continue and she will be back to where she was just a week or so ago. 

Thank you for your encouragement.  I am grateful for those that have encouraged me with scripture and brought specific verses to mind!  Thank you! 

Please pray for:
  • Princess' healing and for these seizures to stop
  • each day will be better than the day before
  • God will reveal His plan and purpose for Princess in this
  • Wisdom on direction to go with treatment
    • We're nearly completely off of all pharmaceuticals
  • Protection of Princess' brain and body through all this

Tuesday, October 16, 2018

200 and counting....

What a week....what a last 24 hours.  The truth is, Princess is having so many seizures, you just stop counting.  Even this morning, she just seemed to be in one continual seizing state.  I cannot even begin to describe just how helpless you feel in a moment like this. 


We ended up getting to the hospital last night (Monday) as Princess' seizures were definitely recurring on a much faster pace and we needed medical intervention to stop the seizures.  After several hours in the ER were taken to the Floor.  It was eerie to be back in the very same room of the ER where we were last year.  Not knowing if I were saying "Goodbye and I love you for the final time" last year, to this time, Princess is very coherent and is able to communicate.  Unfortunately, we spent most of the morning without connecting with a Neuro.  It was not until nearly noon that we finally had a consult and yet no rescue drugs had been administered. 


Through this journey we have come know of others battling this awful illness and the parents would share that their child would have 300 seizures a day....The number is truly unfathomable, and yet, I see now how it is possible.  Again, for us, the most we have generally counted in a day is 25.  Even with last year's event Princess was just stuck in a continuous seizure and convulsion.  My heart goes out for those that are struggling literally every waking minute and every minute of the day with seizures. 


We finally got an opportunity (over 12 hours later) to connect with the Neuro on Call. We came up with a plan to dose a rescue drug for Princess and shortly after administering the drug, we did see the burden lighten. Princess was a little more coherent and the seizure activity seemed to slow. That would only last for a quick and short three hours.  Again, the onslaught began and she seems to be having seizure upon seizure.  For example, she has had 16 in just over the last two hours.  We did elect to do another rescue drug to try to stop the seizures and those administered we have still have a few more. 


So that is our journey for today.  Please be in prayer, as you are already doing. 


As a friend reminded me, God did a miracle last year, and HE WILL DO IT AGAIN!!!  In Jesus name. 

Sunday, October 14, 2018

Prayers and Petitions

Over the last 12.5 years of this journey, I can vividly recall certain events that have seemed to define our journey.  There are certain hospitalizations, certain conversations, certain doctors visits that I can still recall nearly every detail.  Each moment serves as a time stamp along this journey.  There have been moments of setbacks, and moments of progress.  There have been sadness and tears, and there has been moments of rejoicing and encouragement. 


What Princess has endured over this last week has not been anything that I recall.  In fact, in just 5 days she is well over 120 Episodes (in all reality, seizures) and we are at a loss as to why.  The last several months have been normal for us.  She has made incredible progress in coming off or down on her Anti Seizure Drugs.  This made possible all by the Lord's provision and His timing. 


What she has gone through has been life changing.  Since the introduction of CBD into the mix, Princess has improved dramatically.  She has been able to reduce her pharmaceuticals and has not had to visit the hospital multiple times per year.  She has had some tremendous strides in making progress.


YET....


This last week has been very unique and different.  Again, over 120 Episodes in just 5 days (As I write this, she just finished another episode).  We are at a loss as to what is going on.  Please pray a special prayer for Princess right now.  Our plan is to get to her Neuro and get a EEG attached to hopefully discover what these episodes are and of course we are asking and praying for wisdom as to what is the best course of action to try to stop these events. 


Princess could sure use your intervention on our behalf!  Thanks for praying! 

#HealingForHaylie-Post 66

We have so much to celebrate! Thank you to everyone for all your prayers and support. God is sooo good! We were thrilled to have the clear bone marrow report on Friday! Haylie wanted to celebrate by having a few friends over and getting ice cream! It was the first time she has had ice cream since she was admitted to the hospital in May. We have been very careful about staying away from sugar because we know that cancer grows with sugar. That has been one of our biggest challenges, because our family really loves sweets. She has taken it upon herself to not eat sugary foods. I’ve been so impressed at how she has resisted, especially when people brought over all kinds of deserts after we got out of the hospital. She really is a warrior. 

Unfortunately, she has been really sick this weekend throwing up so many many times. She thinks it was the very small cup of ice cream she had, I think it was the chemo shots but she is vowing not to eat any more ice cream. 😳 She loved having friends over, but she overdid it and really crashed hard Friday night and really all weekend. Her friends were the sweetest and were so kind and patient with her.

We go back to the hospital again tomorrow for more chemo shots. Many people thought that she was done with all her chemo since she got the clear bone marrow test, but that is not the case. She actually will continue the same chemo schedule because the doctor said that cancer returned in all patients who stopped chemo after getting clear bone marrow results. Apparently cancer likes to hide out in the bone marrow and make a comeback so we will continue the plan. The clear bone marrow tests mean that the chemo is working and she won’t need to have a bone marrow transplant. Praise God!

She is nearing the end of this next phase and her doctors said she should start feeling much better in the next phase. We are certainly looking forward to the better days! She makes me so proud with her positive outlook and her smile. She is going to beat this. We have come a long ways since the first night in the ICU. We serve such a big God. I was reading some of the verses I had hung on the wall in her hospital room and I see how how God has been with us every step of the way.

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

For I am the Lord your God, who takes hold of your right hand and says to you; do not fear; I will help you. Isaiah 41:13

God is faithful. He is greater than the mountain in front of us. We still have a long way to go before we have this behind us, but we know God is going before us.
#HealingForHaylie



Friday, October 12, 2018

#HealingForHaylie-Post 64

Yesterday post from Melissa:

Well...my day didn’t start out the greatest with Brennen waking me up at 3:45am with an upset stomach. 😬. He was up from 3:45 to 5:30 and he said he really hurt so I kept him home. Turns out it was a good thing because he has the stomach bug and is running a 102.3 fever. I’ve been trying to keep him away from Haylie because she just can’t be around anyone sick. She has had an upset stomach and started throwing up around 10:30 this morning. I about panicked but it seems to just be her chemo causing side effects again. Thank heavens. 

My house was an absolute wreck...again. I was so extremely blessed to have Cleaning for a Cause come over to clean my house today. The timing couldn’t have been better! I certainly needed some help today. They were fabulous and have my house back in order. The service was Two Maids and a Mop and they were such a blessing! I guess God knew the exact time I needed them most.
Tomorrow I have to take Haylie back to the hospital for another chemo shot and we will also get the results from her bone marrow test. Asking for big prayers.

Also, can anyone recommend a sitter that could stay with Brennen? I can’t send him to school and I can’t take him with me to the hospital. 😬