Thursday, July 28, 2016

Time marches on...

It has been a long summer. I have been trying to find the time and motivation to write an update and both seemed to elude me. Last time I updated, we were in the thick of radiation with Hank. He finished radiation on June 22. Here's the video of Hank ringing the commencement gong... I can't guarantee the quality... but if you really want a better quality version, feel free to email me.

It was a bitter sweet day. His treatment was done, but he still had to recover from mouth sores and fatigue... plus, the week he finished radiation (which he went to every weekday for almost 6 weeks) was a week he had Irinotecan injections for chemo (meaning he had to go every day for chemo that week). This meant that for 6 weeks straight, Taylor and Hank had to trek out to Arlington and/or Dallas every week day for treatments.
We were incredibly thankful for the financial support of those near and far, which made it possible for Taylor to not have to worry about working on top of taking Hank to treatment. Thank you soon much to all who have prayed for us and paid for us to make it through that demanding time.
Since radiation ended, Hank has continued on his chemo plan (set to finish around Christmas... the week of, if he stays on track) which has a few weeks off here and there. As we are at the halfway point of his chemo calendar, it is crazy to think back on the journey to now. It is crazy to think we somehow raised up a little baby girl, who is now six months old and the cutest little chunk ever. It is crazy to think we somehow managed to get our eight year old to and from school everyday through the second semester. It is baffling to think we managed to somehow juggle life, kids, work, and people in the midst of all of the heart-break.
This summer has been hard. Summers always are... school is out, kids are hot, inside, and bored... always bored. haha. My fare skinned kids burn if out too long, it's too hot to play outside, we don't have a pool, sprinklers lose their charm quickly, water balloons disappear quicker than they can be filled, reading is "no fun" all of a sudden, movies and tv all day long make for rotten attitudes, we can't do indoor playgrounds because of germs, we can't do public pools because of germs, we can't go to water parks because of germs... I could go on and on. Visiting friends is tricky... we have been canceled on many times due to "sniffles, sneezes, mild coughs, and not feeling well." I am thankful. I am thankful my friends care enough about our Hank to cancel. But I can't lie, it gets lonely. There are days I daydream about hosing down indoor playgrounds with sanitizer so that we can safely take Hank out to play.
Speaking of safe places to play, you might remember we had a mold issue with the house we rent earlier this spring. Well... our landlord added extra vents tot he foundation, and used a huge fan to suck out the moisture under the house. We cleaned the windows and removed all the blinds that had mold. We also scrubbed walls and bought shelves to create ventilation in the closets. We run air purifiers round the clock... and yet, when Taylor and I were about to set off on a short weekend getaway (Thank you mom and dad for offering to & watching all the kids), we found mold on a vent cover. So, knowing there had never been any formal inspection as to whether the daunting mold issue under the house actually was resolved... we made it known to our landlords that we NEEDED a professional to come out and let us know what we were dealing with. We needed to know what kind/ where/ how much/ and how to get rid of the mold. So, our landlord got a professional out and after waiting for the results, we finally got some spore counts and species. We asked our doctor what these numbers/varieties meant for Hank. And since he just received the big V.A.C. (heavy duty) check last week, they wanted us to get Hank out of the house. So Taylor and Hank are in quarantine at Tay's parents. I am holding down the "not dangerous to normal immune systems" fort with Ruby, Lena, and Cor. And so we shall be, until we hear the plan of action for removing the mold. Not sure where we will stay while the remediation happens, but with Hank's immune system on the downward slope, we have to be careful as to where and what we expose him to.
The V.A.C. drops Hank's ability to fight off disease about 7-10 days out from date of receiving, and the further along in treatment... the harder it is for Hank to regain his full ability to fight off infections/disease.
We were cruising right along in Hank's chemo plan and he was doing REALLY well. We hadn't had any delays due to his health, until just a couple weeks ago. Hank's white cell count was too low for him to receive chemo, so we pushed treatment back a week. It was a reality check for me. Hank looked like he felt fine, but his blood work told us another story. IT's funny how we always say, don't judge a book by it's cover. It is such a true statement. Just because we look okay on the outside, doesn't mean the inside is doing well. I am sure the cashier at the grocery store today thought my life was just peachy as I smiled and thanked her for helping me bag my groceries. As I asked her how her day was, and if she had any fun summer adventures planned or in the books. She had no clue I was worried about mold spore counts and how badly they could wreck my four year old's body.
I never intend to sound like a "negative Nellie" on here, but I think you all read this blog to truly know the going ons. To know how to pray with and for us. To be able to empathize and sympathize with Hank and with our family. I don't think you can do that if I smile and tell you "I'm doing okay, thanks" as I did to the cashier today.
Hank seems to be doing well. He has become more familiar and less afraid of the chemo routine in some ways. He is eating like a CHAMP lately... seriously, the kids can out eat me. I am super grateful for his appetite. He is pretty good about hand washing/sanitizing and is vigilant about checking to see if his drinks have tap water in them. Haha. He is smiling, and laughing, and playing. He is also whiny, and hot-headed, and tired by 6. Hank gets excited about having guests, but is perfectly content just being home with the family too. He is a sweet snuggler, obsessed with Ruby, annoyed by Lena, and hot and cold with Corin. (Although the boys have played fairly well with one another the past few days.)
This is our life. Unpredictably beautiful and messy. Sweet and scary. Calm and chaotic. All things, at different times... I think that is life for everyone. Maybe not on such high highs or low lows of the spectrum... but life no less.
Taylor and I, well... I can only speak for myself. I can say that I know Taylor enjoys being the one who takes Hank to treatments, to be a part of that time with Hank and to be able to calm and sooth Hank in those times.
And me, well... I can't pretend that I am okay. I am struggling. I am struggling to see joy some days. I am struggling to trust in God some days. I am overwhelmed by God's faithfulness some days, but other days I have so many questions... several of which begin with "why?!" It is hard to explain where I am in my relationship with God right now. I still trust that Christ died for me. That my sins are washed clean by the body and blood of Christ. I can't explain how I know with all certainty that Jesus loves me and died for me. It is an aching of my heart for Jesus.
But in the same swing of the pendulum, I trust in God and then I don't.
I am not one to say/believe that "I think everything happens for a reason." Or that "God never gives us more than we can handle." I think God can use everything that happens to His glory. I also think that it breaks his heart to have to use a lot of life's/sin's consequences for his glory. I don't think that God creates horrific seasons in our lives to sanctify us or teach us a lesson. I don't think God places cancer, or SIDS, or any other horrific circumstance in people's lives "for them to become stronger."
And yet... I can't help but be a little angry with God for not holding back some of those circumstances... because I know he could. I am not stronger. I am not stronger because of these trials. I am not stronger after losing a son to SIDS and now watching Hank struggle through cancer. I am not stronger, but I am more sympathetic, more empathetic, more enlightened to things I was once ignorant about. I might be "wiser", but I am not stronger. Please don't mistake one for the other.
I cry. A lot. I question. A lot. I struggle. A lot. I am weak. A LOT.
There are a lot of great things happening in my life too.
Taylor and I celebrated our 10 year anniversary. The kids constantly bring smiles and laughter to my heart (and face). :) Friends and family are constant comforts and joy. Our life is not consumed with pain and sadness and dwelling on Hank's cancer... there is some normalcy, there is still happiness.

Just know though, that if you ask how we are doing... you might not get the pretty book cover you were anticipating... you might just get the full story.
     I will leave you with a "rainbow over a boat."

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