#HealingForHaylie-Post 68

Haylie update - Oct 29

We have had a whole week off of going to the hospital for chemo and it has been so good! Haylie has had more energy than before and felt so much better too. We were able to do a lot in the last few days. Friday she made it to the Bulldog Blitz at Brennen’s school and it was so wonderful to see her old teachers and school staff. I have so many pictures, I’ll have to post them tomorrow. Saturday we made it to church for the 2nd week in a row! Hallelujah!

Sunday was a very long day at Brennen’s baseball tournament, but it was a fun day. This was the first baseball game Haylie has been to since her diagnosis. It was a super early morning for us since we had an 8am game in Rockwall, which is an hour away. It was so awesome to get to see so many of our wonderful friends we have missed so much. I wish I had gotten a picture with more of y’all.
It worked out for us to run to our old church and see many of our old church friends. We are so thankful for so many of them who have prayed for us, encouraged us, and sent care packages to us while in the hospital. Getting to see friends and hug them made my heart full.

Haylie and Brennen were thrilled to also get to see old friends. The tournament didn’t go as planned, but it worked out for us to get to visit with sweet friends, so all was not lost. It made it even better when we found out the championship game started after 9pm. 😳 No thank you on a school night that we had been up since 5:45am.

Today has been a big day for Haylie. She decided it was time to shave her head. She had a few strands of hair that didn’t fall out, and her hair has started growing back and it was all different lengths so she had me cut it so it would all be the same. I have to say, even though there wasn’t much hair to cut, it was still hard to take the clippers and shave my daughters head. It’s just one of those things I never thought I would have to do. She was such a champ and it didn’t seem to bother her much at all. I really am inspired by her resilience.

Today we also moved her bed back to her room and she will sleep in her own bed, in her own room for the first time in 5 months. It’s hard to believe it has been that long. A month in the hospital and 4 months on her mattress on our floor. She was a little reluctant to go, but I think it is best for all of us.
Tomorrow we head back to the hospital to start another round of chemo. Agh. I just want her to still feel good for her birthday this week. We still appreciate everyone’s prayers. God is so good and continues to go before us and fight this battle.
#HealingForHaylie

Back in her room!

 Haircut video

We were exhausted and this is what I found last night.

First baseball game back to cheer on the 9U Bobcats.

It was a long and exhausting day for both Peanut and Haylie.

Best friends since preschool.

Haylie and Morgan - birthday buddies. Haylie is actually a few hours older. 😂

So much fun with her sweet friend Ashley.

POTS

This is one of my diagnosis...
She does a great job of explaining it: And just like that, everything changed

#HealingForHaylie-Post 67

Haylie update - Oct 22

Today we celebrate Haylie’s last Erwinaze shot for this round. It’s been a rough 2 weeks with 3 trips a week to the hospital for shots in the pouring rain, long waits for the medicine and just to get a clinic room, and lots of bruises on her legs, but we have finally made it through!

It’s also been an adventurous 2 weeks. Haylie was chosen to be in the Children’s Cancer Fund spring fashion show and they had the announcement presentation on Friday. So fun! We also witnessed the fire in the sky bridge with 2 fire trucks to put it out on Monday! 

Her ANC was the highest it’s been since her diagnosis on Friday!! That was a great thing, but that also means they upped the amount of her chemo medicine since her body is tolerating it. Friday was a bit rough with the 3 different chemo meds she had to take. The only thing she wanted to do was go to Jason’s Deli and eat at their salad bar. It’s one of her favorite places but she hasn’t been able to go in the last few months because of risk of infection. Poor thing felt awful on Friday so we couldn’t make it to celebrate. We did make it on Saturday though! She does love the salad bar.

We also were able to make it back to the live service at church on Sunday. Things are looking up. We are halfway through the consolidation phase and are happy to get this one behind us.

Haylie and I are both super happy we don’t have to go back to the hospital until next week! So today we will celebrate!
#HealingForHaylie

CCF Announcement! Found out she gets to be in the Spring Fashion Show!

Got a beautiful teddy bear surprise!

Jason’s Deli- happy girl with her salad bar!

We have to wait an extra hour after each shot to make sure there is no reaction.

Waiting some more...

Waiting for a room to get our chemo. We usually spent 1-2 hours waiting here each day

Getting her last 2 very painful shots this round.

Hope Kids delivered gifts today.

The fire trucks. Turns out it was not a drill!

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.

² 

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

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. 

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

#HealingForHaylie-Post 65

Video of Haylie October 12th

#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. 😬

What a couple days...

It has been too long since we last posted an update and frankly, things have been okay.  Compared to this time last year we have had a dramatic and favorable few months.  In July, Princess was able to successfully get off of one of her AED's (Keppra) and has likewise been able to reduce her final AED by 98% since May 2015.  It has been quite a journey and Lord willing, hopefully Princess' seizures will soon stop. 


The journey has been long and our faith has remained steadfast in the Lord who has guided us these last 12.5 years.  And with each day that seems to draw closer to being off of her final med (Onfi/Clobazam) the bad days seem all the more worse and we seem desperate to find answers as to why Princess is feeling the way she is feeling. 


These last few days have been very trying.  For some time we have tried to differentiate for ourselves moments that we call seizures (Princess generally has to lay on the ground or lay her head down covering her eyes and ears) and moments we call Events or "Push Through ONEs."  For some reason, the last few weeks have certainly had a lot more downs than ups and the last two days have certainly tried us. 


In the last two days, Princess has had nearly 40 "push through moments" that in all reality are seizures.  Though they are not as severe as her seizures, Princess is exhausted, tired, perplexed, and just worn out.  Not wanting to repeat last year as it seemed that is where she was headed, we did go to the hospital to get labs completed last night.  Thankfully, the labs were normal...good news.  Unfortunately, there was no outlier or indication as to why she was feeling and experiencing event after event. 


So as we do so often, and as you have done for us, too...We get on our knees and ask God for strength and wisdom & peace and wisdom.  Thanks for PRAYING with us and for Princess!  Thank you for your encouragement along the way!  It means the world to Princess! 

#HealingForHaylie-Post 63

Haylie update - Oct 9

We are at the hospital and we just got Haylie’s labs back. Her ANC is now at 1790! We are so thankful. Her hemoglobin and platelets look great too at 12.0 and 276! She just had her port accessed and she is about to have her spinal tap and bone marrow test. This is a big one. We are asking for prayer that her bone marrow test comes back at 0%.

On the drive in, I was encouraged by the lyrics to Chris Tomlin’s song, Angel Armies.

I know who goes before me,
I know who stands behind,
The God of angel armies 
is always by my side.

Haylie has her angels by her right now. 
#HealingForHaylie

#HealingForHaylie-Post 62

Haylie update - Oct 4

Thank you everyone for the prayers for Haylie today. Unfortunately, she did not make her ANC counts again today, so her doctor has postponed her bone marrow test and spinal tap until Tuesday. We get a few more days of no chemo to recover. Not what we planned when we got to the hospital after fasting today, but I think it could be a blessing in disguise. God knows what is best and we continue to trust in him.

#HealingForHaylie

#HealingForHaylie-Post 61

Haylie Update - Oct 3

This past week has had its ups and downs for sure, but I am so thankful for moments when we can forget about cancer and just have fun enjoying life. Haylie is such a social person and she really gets encouraged and energized by being around friends. We were thankful to see sweet friends at the homecoming parade, but even more thankful to have a weekend to spend with family. It was so good to hear laughter filling the house. Haylie had so much fun just being a kid with her cousin Sage. I don’t even know how much slime was made between the two of them. 😜

I haven’t posted in about a week, so a lot has happened since my last post. Last week, Haylie did not make her blood counts to have her procedure done. I actually think that was a good thing. Doctors gave her a week off of chemo to try and get her ANC back up. Last time she was off for a week to get her counts back up she did so well that her count jumped from 110 to 1970 and her hair even started growing back! It’s a small thing, but it gives us hope. Doctors said her hair would not grow back for months and that this hair would fall out, but so far it hasn’t. She is a fighter and we are encouraged that she is beating the odds.

Her ANC was at 20 on Friday. 😬 She needs to be at least 750 for her bone marrow test and spinal tap tomorrow. I expect her levels to be way up. She has so much more energy and feels so much better than in the last 2 weeks. It’s so good to see her doing stuff that I used to take for granted. She rode her bike down the street for the first time since May. Her legs got really tired after one short ride, but we will still take it as a success and celebrate the victory.

It was great to see the kids playing cards with BoomBoom (grandpa). We taught them the old card game spoons and they are hooked.

Michael and I were even able to make it to church on Sunday, while Mamie and Stephanie stayed with Haylie at the house. I love the worship service at our church and I’ve really missed it. It was the international worship conference weekend and it was amazing to hear worship in several different languages. It doesn’t matter what language we speak, God is still God!

Ok, here is the big one. I’m asking for prayer for Haylie’s bone marrow test tomorrow. The last time she had her bone marrow test was the day we were released from the hospital the first time. She was still at 2% cancer cells then. She needs to be at 0% tomorrow or we have to take the next step of a bone marrow transplant. She looks great and is feeling so much better this week so I am extremely hopeful. God has got this. I know He is going before us right now.

No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him. 1 Corinthians 2:9

I believe God still has big plans in store for Haylie and I can’t wait to see them.
#HealingForHaylie

 

The grandkids

She is trying to teach Peanut how to play the piano.

Beautiful sunset at the homecoming parade

Video