#HealingForHaylie-Post 126

 Done!! Ring that Bell!!!

Where were you when the world stopped turning?

 

Well, September 11th has very substantial meaning for our nation, but it also does for our family.

September 11, 2006, 14 years ago, the Foxhole changed a bit.

Here are the details of it that I posted four years ago!!

Here is the blog that we created for his journey!!

Thank you each for being such amazing prayer warriors!!

 

In sickness and in health...

 

Webster & Wikipedia have definitions of Marriage & commitment.  However, if they were accurate definitions, it would be a picture of my man leaning on Jesus!!! 

 

Imagine your life going the way you had planned.  You had a ceremony where you said, “in sickness & in health, til death do us part.”  However, you had always known health & so there wasn’t a reason to be concerned about sickness or death.  However, after a year of marriage, you lost your first child to a miscarriage.  Then, after being married for two and a half years, your wife became ill, but no diagnosis could cover the symptoms.  In the meantime, you started the adoption process and began searching for your little one in S. Korea.  “Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.” James 1:27.

Then, after three years of marriage, you are diagnosed with cancer.  When you wake from the surgery where the cancer was discovered and your wife tells you that you have cancer, you say, “Cool, that means I get to be a cancer survivor!”  Huh?  Most people curl up in a ball and cry, but not you!  Your attitude is one of complete trust in the Lord (Prov. 3:5-6) and how that encourages your wife!!  To that point, you were declared cancer FREE three months later!!!  You were told that you had to be cancer free for so many years before you could complete the adoption process. 

Then, a year and a half later, your wife’s sickness got so bad that you actually passed an ambulance with its lights on, rushing to the hospital to get your wife in to the ER.  It’s there that she was diagnosed with epilepsy!  When she returned home from the hospital, her vehicle for work was picked up and she’s not heard from her company since then…most of her dear friends fell off the face of the earth and to this day, can’t be reached, despite many attempts.  However, you are still there!  Seventeen years later!!!  In a lot more sickness, than health!

She had brain surgery to remove the part of her brain that was seizing, to only learn that both halves of her brain are seizing and so they can’t surgically remove part of her brain.  As well, the docs said they can’t find the point of origin of her seizures and so again, they can’t do much more surgically.  Thus, you had a bald wife for many months with staples in her head that can still set off metal detectors at the airport!

 

In the meantime, you learned that a child could not be adopted until your wife had gone without seizures for a certain number of years.  Yet, you celebrate a few hours of your wife not having a seizure, so years?  Really?  Then, you and your wife had a baby on the way!  So exciting!  However, a few days after your baby was home, she became non-responsive and had to be rushed in to the hospital where she lived for the next week due to “wacky labs,” but no real diagnosis!

Once your daughter was back home, you learned that when she cried, your wife couldn’t hold her because the cry triggered her seizures and holding a baby while having a seizure isn’t a good plan.  So, the community stepped up and helped out for a bit.  However, you still weren’t able to return to work full time because your wife still needed you.  At the very least, four times every single year, your wife had to be hospitalized.  Are you catching on to the sickness portion of this?

So, now we’ll jump ahead a few more years, and the news did a story on a sweet little girl in Colorado with seizures and medical marijuana.  Your wife was President of D-FY-IT (Drug Free Youth In Texas) in high school and was in pharmaceutical sales, so she’s not touching a “drug.”  As a kid, you also learned to, “just say no,” and so you are saying it, too!!  Everyone keeps asking if you’ve thought about it, but it’s a drug.  So, “No!”  However, here you are a couple years later and your wife is being hospitalized again, having a seizure every 18 minutes.  The docs come to you and say there is nothing left to do, they are just going to keep her alive.  You tell your wife this and she says that she knows where she’s going if she dies ( “For God so loved the world, that He gave His only begotten Son, that whoever believes in Him shall not perish, but have eternal life. John 3:16) and you have a child and puppies at home that would love a Mom.  You have a wife that would love to be a Mom.  So, you sign all of the waivers that you understand your risks and you take her home.

The following Sunday, despite how exhausted your wife is from having so many seizures, you lead her spiritually and get her to church.  When you get her seated, your Pastor sees your leadership & love and stops the service, has you share what has been going on in your family, your wife sees you cry for the first time ever, and then the Pastor offers prayer for your family from the entire body!!  At the end of the service, a lady gave you a sheet of paper with her name, phone #, and “MD in Colorado” written on it.  You want your wife to live and so you call the doc.  You then plan to move to Colorado, sign a lease, etc., so that your wife can take Medical marijuana!  However, after hundreds of seizures and only CBD, not marijuana, your wife is improving.  So, you come back to Texas.  Your wife doesn’t sit still very well and so she begins a battle with the state & federal government to get CBD legalized.  Since she can’t drive or remember most things, you take her to each and every conversation with elected officials throughout the state.

Did we mention at the beginning that your job is commission based and so if you’re not working, you’re not making money.  There isn’t a family leave program.  So, each and every time that your wife is hospitalized or needs a ride somewhere because she hasn’t driven since 2008, you can’t make money.  Thus, “….for richer or poorer,” comes in to play, too!!!  Are you tired yet?

Now, let’s fast forward a couple more years.  Since starting the CBD, your wife is able to start coming off of the toxic pharmaceuticals.  She is almost completely off of one and only has 5 mg left of another.  The other is super duper toxic and so she can only reduce it by 10% every three weeks.  The smallest you can get the pill is 10mg and you’ve broken it in half to be at 5mg.  So, it can’t get smaller & you can’t find a compounding pharmacy that can help.  So, for your wife to get her dose lowered, she starts skipping days of taking the pill.  It has worked just fine throughout the previous two year journey of getting off of pharmaceuticals.  However, it’s a very strong medicine and her body decides to completely deplete her of sodium & she starts seizing for three hours until the docs are able to get her intubated and in a coma.  This lasts for an entire month.  Yes, that’s an entire month of you sitting in a hospital room with your wife in a coma and you are unable to work.  Remember that whole richer or poorer, sickness and health, til death do us part speech you gave over fourteen years ago?  Yep, you are sticking to it!!!!  Wow!  She’s never really known a man to do that!!

We can now fast forward to 2020.  The world went crazy!!!  All of your sweet friends who would take your wife to the store so that you could work are now asking to stay home to not get sick.  So, the responsibility is back on your shoulders.  You have a nine year old who needs to be kept busy and a wife who just wants to feel normal.  Since she’s in her 40s, started driving when she was 15, but now hasn’t driven in 12 years and isn’t able to just run to the grocery store when she needs something, but has to interrupt you, you are definitely feeling the burden.  The world is going crazy in March because they are locked in their homes for a few days.  Then, it extends through the summer and people are going even more crazy.  Yet your wife has been “locked in the house” for twelve years.  If they want to get out & go for a drive and not infect someone they can, your wife can’t just get in the car & drive…So, you want to just take her places, but you need to be working.  You still sacrifice your time, but that also means your income.

Recall that your work is commission based and your first year in the business, prior to your wife’s diagnosis, you received an award that no rookie has ever won before because you care so much about others and taking care of their families the way you take care of yours.  So, if you can just work, you can care for your family and not sit in the “poorer” category.  However, you don’t define marriage by being richer or healthy, you define it by unconditional love for a wife that is living!

Husbands, love your wives, just as Christ also loved the church and gave Himself up for her, so that He might sanctify her, having cleansed her by the washing of water with the word, that He might present to Himself the church in all her glory, having no spot or wrinkle or any such thing; but that she would be holy and blameless.  So husbands ought also to love their own wives as their own bodies. He who loves his own wife loves himself; for no one ever hated his own flesh, but nourishes and cherishes it, just as Christ also does the church, because we are members of His body. For this reason a man shall leave his father and mother and shall be joined to his wife, and the two shall become one flesh.  This mystery is great; but I am speaking with reference to Christ and the church.  Nevertheless, each individual among you also is to love his own wife even as himself, and the wife must see to it that she respects her husband. Ephesians 5:25-33

So, as his wife, I request that you reach out to Webster and Wikipedia and ask them to correct their definition of marriage and commitment!!

A horse is a horse of course of course...

...that is unless the horse of course is the famous, Mrs. Killer!!

My little horseback rider

This past weekend was a fun one for my kiddo!  She competed in her first ever horse show!  Guess what?  She got FIRST PLACE in both events!!  Now, past that, all I know is that it's a horse of course!  B and I know very little about horses.  She would definitely beat us on a test.

This is her favorite horse right now, a female named Killer!!!

You might begin to see more posts about horses, but unless she's doing the post, I don't know that we'll be teaching too much!!! 😜😜😜

One of her events!!

Her 1st First Place ribbon!!!

I think this is called jumping!!

Lovin' on Killer!!!

You think she was excited?!?!

#HealingForHaylie-Post 121

Haylie Update- Apr 30

It’s been a while since my last update. Haylie had a really rough time during the last round of chemo and steroids and with so much negativity with covid-19, I just didn’t want to post. Thankfully she has been doing much better and gotten her strength back the last few weeks. Today, we are at the hospital once again waiting on the anesthesiologist for Haylie’s spinal tap and chemo.

This is a multi level post I guess. Her labs came back good, chemo is done and we are finally home resting. We got good news from her oncologist who said it would be ok to order takeout from Olive Garden if we are careful. We haven’t been able to order out in a while after we were told we shouldn’t risk it. Haylie was craving the calamari this time.🤷🏼‍♀️ Unfortunately, they don’t have that on the to go menu so Haylie said forget it. Apparently it was a deal breaker. 😜

She is resting and hopefully feels better soon.
#HealingforHaylie

Selfies before the lumbar puncture

Just got her port accessed

Waiting for her to wake up after the procedure

Hazel knows how to make her feel better. Snuggle time.

Haylie update 2- Apr 30
Well, today didn’t go like we expected. Haylie woke up from her nap not feeling well at all and she felt pretty warm so I took her temp. It was 102.7 on the first reading and then jumped to 103.4 while I was on the phone calling the hospital. 😳 No bueno. So I grabbed our bags and threw some clothes in them and we headed to the ER. We were trying to get to the hospital before 4:00 because that is when the oncology nurses leave clinic. Haylie has had her port missed many times so we were very nervous about having the ER nurses try to access. I have to say I was driving a little fast in order to get here. It was terrible timing when I-35 was at a stand still with a terrible accident. Somehow by God’s grace we arrived at the ER at 3:51 and one of our favorite nurses, Amber, was able to access her port...again for the 2nd time today. Also, when were we’re rushing to get to the ER, a nurse saw us walking very slowly because of Haylie’s spinal tap this morning and ran and got me a wheelchair. Thank you nurse, whoever you were!

We are still in the ER and they have given her antibiotics in her iv. They are taking every precaution and she is in isolation and just got tested for covid-19. Her ANC has fallen over 500 points from this morning and now she is neutropenic. 😔We are asking for prayers for everything to be clear. We will probably be here for a while. Thankfully they have some good movies on and she is watching Overcomer. I’ll update when I know more.
God is in control and goes before us.
#HealingForHaylie

Haylie’s ER update #3
Thank you everyone for all the prayers, texts and messages. We are so blessed to be surrounded by such wonderful friends who carry us along.

Just wanted to update with some good news! Covid test came back negative. Praise God! They had to run a 3rd blood test because oncology said the 2nd test couldn’t be right. Thank goodness they did because 3rd test just came back with her ANC is at 820 so she is not neutropenic. I think it is the result of many many prayers for her. God is good!

The Dr thinks she has some sort of stomach virus and since her fever is going down we will be released and get to go home tonight! Another huge praise! She is finally getting a little nap. I think it’s because they still have the isolation sign up on our room so it’s been very quiet in here lately. 😜
I’m also so thankful that I was able to run to the cafeteria and finally get some food. I was starving. I even got Haylie to eat a little yogurt so it’s a double win.

Thank you to everyone! We love you all and are so thankful for you.
#HealingForHaylie

#HealingForHaylie-Post 120

Haylie update - Mar 26

I’ve had a several people asking how we were doing so I thought I should give an update. I’ve been meaning to do an update post for a while now, but I get on Facebook and start reading all the funny covid-19 and homeschool memes and get totally distracted. Some of them are hilarious, and I’m thankful for laughter during this time.

We are doing good! It’s almost a little sad, but Haylie’s and my life hasn’t changed all that much on the day to day schedule. We have been practicing social distancing for almost 2 years now. 😜 Anytime Haylie’s levels are down or it’s cold and flu season we really can’t go anywhere and we miss just about everything. Now it seems everyone is experiencing what we have been going through. We have missed birthdays, vacations, special events, school, church, seeing friends, going to eat out at restaurants...only now we aren’t the only ones sitting at home. This time, we are all in it together and I feel your pain for all the things missed.

We have been staying home and haven’t gone anywhere except for the occasional bike ride around our neighborhood. Today we finally had to venture out to the hospital for labs. She is supposed to be going in for labs every week since her liver levels got so high and they had to switch her chemo meds. They let us skip last week, but said they can’t let her go longer than 2 weeks without checking.
Her new medicine is doing great at helping her liver, but unfortunately it causes her body to metabolize the chemo differently and sends more of it towards her blood. That is good to kill any cancer cell but the meds don’t distinguish between bad cells and good cells so it has been attacking her red and white blood cells, too. That means her immunity is down to almost neutropenic levels at times and her blood has been borderline transfusion again. Not a great place to be in the midst of a major virus pandemic. Today’s labs came back great! Her liver is in the normal range, her hemoglobin is at 10.6 so no need for another blood transfusion (yay!) and her ANC rose to 980! I know a lot of you won’t know what that means, but it is all good and right where it needs to be so that the chemo can still do it’s work.

We have been keeping busy with school, chores and lots of family time. I know this quarantine has been difficult, but there is also a lot of good. We have been able to eat almost every meal together, play games, and have family movie night every night. Amazing.

We also have the absolute best friends and neighbors. I am forever grateful for Sarah Walker and Laura Burlison who have been checking on us and made grocery store runs for us so we don’t have to leave the house and possibly be exposed while out. We owe y’all big time!

It has been so hard to not run to the grocery store and let others shop for us, but I realize we just can’t take the risk of us contacting it and exposing Haylie. I know we will be fine, but we have to do everything we can to protect Haylie while her immune system is not functioning like the rest of us. It’s just too big a risk for us to take. If you know of an elderly neighbor, pregnant friend or someone immuno-compromised please ask them if you can run to the store for them. You have no idea how big of a help it can be to them.

Spread joy, not Covid-19 😜
#HealingForHaylie

Our daily life. 😜

Protection for our hospital visit today.