Harder Family

Harder Family

Tuesday, November 28, 2023

Update 11/27/23: Hard to Breathe

Psalm 70:5 TPT "Lord, in my place of weakness and need, won't You turn Your heart toward me and hurry to help me? For You are my Savior, and I'm always in Your thoughts. So don't delay to deliver me now, for You are my God."

A lot has transpired since my last post, so bear with me as I try to catch everyone up. Wayne continues to notice a progression of weakness on his right side, especially his right arm. One night he looked at me and said he's not sure how much longer he has, and that we need to make sure we have completed all the things we need to do before he passes away (like changing all the bills into my name). He told me that he says these things to prepare me for when I lose him. When he spoke those words, a dam of built up emotions spilt over. At one point, the thought of losing him completely took my breath away and I had to remind myself to breathe. I didn't know it could physically hurt so bad to think about losing someone you love. 

I reached out to a special friend, Amy, who unfortunately lost her husband to this cancer. I knew that she would understand the range of emotions I was experiencing. She told me that she was praying and that she would get her prayer/fasting group, called the Aspens, to pray for us even more. When she texted me the group name, it was like God was showing me He is in the details. As a kid, we camped a lot at Lake Tahoe. When we would go hiking or fishing, I would love watching my favorite trees, the aspen trees, shiver in the wind. That is the word that came to mind as a kid to describe the way the leaves blow in the wind. To this day, when I see an aspen tree, it brings joy to my heart. How so like God to have this prayer group named after my favorite tree. 

Amy continued to encourage me through a few more texts that evening and into the next day. She reminded me to keep an eternal perspective. She said as hard as it is, we need to remember that we get the honor of walking with our spouses to the end and then Jesus takes them from there. She further inspired me by telling me we get to encircle Jesus with worship: our husbands worship on the heavenly side and us from earth. That statement meant the world to me because I love worshiping Jesus through song. One day Wayne and I may be separated bodily, but in the end, we will worship our Savior together. When you have this perspective, singing worship songs at church to Jesus become so much more beautiful. Think of the lyrics in some of these songs with that perspective: Hymn of Heaven, Worthy of My Song, Endless Praise, Scars in Heaven, 1,000 Names, Behold Him, Find Me at the Feet of Jesus, King of Kings. I could go on forever. Worship with the right heavenly perspective will forever change your heart.

God continued to encourage my heart. The next day, I was discussing some things with Grace and she told me that she had been reading Screwtape Letters. She told me that although the book is a little difficult to understand, she found one of the parts very interesting. Grace explained that one of the enemies' tactics is to get us so focused on earth, that we forget about heaven. The demon says, "...that our best method, at this stage, of attaching them to earth is to make them believe that earth can be turned into Heaven." The tactic of our enemy to get us too comfortable here on earth to the point of it feeling like heaven to us. Grace and I discussed that further and she said that if we have that focus, it makes our trials here look harder. But if we have a heavenly view, the trials don't feel as heavy because we know what is coming. This conversation reminded me of 2 Corinthians 4:17-18 "For this light and momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."

Compared to eternity, our trials here are just a momentary thing. Now this doesn't mean that the trials aren't difficult to walk through, but it's the mindset one must have while traversing through the trial. I think of it like how I used to attack a half marathon. As I ran, I would keep my focus on running toward the end goal. If I got stuck looking at my slow progression and how much further I had to go, or how sore my feet and body were, I would get discouraged and just want to quit. In the same way, when we are going through a trial, we must keep our eyes on heaven and not get bogged down by our circumstances. 

It was in these few conversations that God spoke to me and reminded me that He sees and He knows. He hasn't left my side, He will continue to sustain me, and He will get us through these difficult trials.

Update Wayne: As mentioned earlier, Wayne’s right side continues to weaken. He is also struggling with his broken ankle, which has further complicated his care. Thankfully, this chemo round has not been as bad on me and I have been able to continue as his primary caregiver. We have been utilizing his two wheelchairs to help him get around. Wayne was even able to attend church with us on Sunday!

Yesterday, we finally met with Wayne’s new doctor here in Lexington. Wayne and I really liked him and were impressed by him. He was very knowledgeable and informative. The doctor asked Wayne if anyone had offered ivosidenib to him. Apparently, this drug has been found to be beneficial to people with an IDH gene mutation in their tumors. It is used for acute myeloid leukemia and cholangiocarcinoma, but found to also help people with brain tumors. The sister medicine, vorasidenib, is even more effective for brain tumors, but it won't be available until next fall. The doctor was upset that no one offered that to us after Wayne's recurrence and before we did a second round of radiation. I guess the medicine is more effective with less treatments. I found myself getting very upset that not one doctor at Northwestern or Cleveland Clinic mentioned this as a treatment option to us. I had to quickly remind myself that God is sovereign and could have brought this to our attention sooner. For some reason, it wasn't until now that we have discovered this. But, just like every trial we have encountered, God has always used it to help others, so I hope to do the same with this information. I have already reached out to some other wives whose husbands have the same gene mutation to let them know about this drug. If this knowledge can help them in their battles, it is worth it. It reminds me of 2 Corinthians 1:4 "He comforts us in all our troubles, so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us." 

We learned a lot at the appointment and this is where we are at with treatment. Wayne will receive his first Avastin infusion Thursday. This drug should help Wayne with his symptoms and may help decreased the weakness in his right side. If he handles this treatment okay, then we will add back his chemo, temador, but using a different dosage. Instead of doing 5 days of chemo and 23 days off, he will do a lower dose for 21 days straight and 7 days off. The thought behind this is that the tumor will be hit for more days with the chemo so it can't act up as much. The doctor of course can't guarantee anything, but he is hopeful that with the IDH drug and this chemo, along with the Avastin, that we might see no tumor growth and its possible to maybe see a little shrinkage. We walked away from that appointment with a little more hope then Wayne left Chicago.

Rolling around with his new wheels

We found a way to play cards. Since Wayne can't hold anything with his right hand, we found these in the closet from when DJ would play cards with us.

The kids have been great help when I need extra hands with Wayne

Wayne getting his cast. We will have to go back every two weeks for new casts.

Rebecca Update: I have felt amazing this chemo round. I believe it is all your prayers sustaining me. I have asked a few times if they really gave me chemo since I have felt so good. I am mentally getting myself prepared for my next round, which is this Friday. Please pray that God allows this round to be as kind as this last round.

Family Update: We have enjoyed having Grace home with us and we’re thrilled that Abigail was home for a week with us. Since everyone was home, we decided to make some fun memories. Unfortunately, Wayne didn't join us for two of the events, but he did make it to see lights with us. I took the kids to see the new Hunger Games movie, which was amazing. The next day, we went to Countdown Games and did their new escape room, Scary One, which was fabulous! We managed to work great as a team and we escaped!! Then we had Thanksgiving with family, followed by our tradition of seeing lights at the Creation Museum.

Everyone working hard together to prepare for Thanksgiving. Many hands made easy work.

I'm thankful for my kid's obsession with Be Real, because they were able to capture memories for us at Thanksgiving that I failed to do.

While the girls were getting food ready, the guys were outside putting a trailer hitch on our Sienna so we can take Wayne's wheelchair with us.

My dad and me

Our annual gingerbread decorating took place on Saturday. The kids all enjoyed that 

Abigail and her boyfriend, Elijah, working hard on their house

Christmas lights at the Creation Museum. The kids decided to "reenact" the manger scene.

We got creative with a solution to keep Wayne’s casted foot on the wheelchair for rest. Grace grabbed a flannel and tied his foot to the wheelchair. Wayne and I didn’t do the whole lights loop this year because there were some steep slopes that he didn’t want to chance with me pushing him. 

Shan pretended that the dinosaur ate his leg. 

Yesterday, Sophia decided to remove another few years off my life. After receiving her allergy shots, we left the office and headed for home. When we were about two minutes away, she told me I needed to pull over. I was initially confused until she told me she couldn’t breathe. Sophia is seriously my hero. She told me that she was seeing stars since she couldn’t breathe and she simultaneously grabbed her epi pen and jabbed it in her leg. Thankfully, it worked and her breathing got better. I quickly turned around and went back to the allergy office so they could monitor her.  We stayed for about an hour until they felt she was stable. Needless to say, we will see the allergist next week to see if we need to adjust her shot schedule going forward. I also told Sophia from now on, she needs to stay at the office for about 10 minutes to make sure she doesn’t have a reaction like that again. 

Prayer Requests:

- Please for Wayne as he goes in Thursday for his first infusion. Pray that he has little side effects so that the doctor will allow Wayne to continue with his chemo with the modified schedule. Please also pray that the insurance approves the new medicine the doctor wants to try.

- Please pray for me as I get ready to endure round 3 of chemo on Friday. Please pray for little to no side effects so that I can continue to care for Wayne. 

- Please pray for our kids. Pray for their hearts as they walk along this road with us.

As always, thank you for praying for us, supporting us, and encouraging us. We love and appreciate you all. I am doing my best to send everyone thank you cards. If I have missed you, I am truly thankful for you and all that you’ve done for us. 🩷

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