672 Days of Chemo.

APRIL 2020

April was an entire month of togetherness and a slow-paced quarantined life. Our family had so much to be thankful for during this weird time in our country. We took togetherness to a whole other level this month though, being as we don’t have family near us, it has been the four of us in the four walls of our home pretty much the entire month. All this togetherness has had its ups and downs but anytime it’s the four of us together it’s good. Really good.

It’s springtime here in Ohio, that means really nice days mixed days with really cold weather and rain. We were outside when we could be but most days were spent inside, listening to our kiddos playing!

One evening when it was nice, we were all outside and LJ asked if we could make muffins (which meant cupcakes) and it just so happened to be our dog Dolce’s birthday! So we all went inside and stayed up too late making cupcakes and a springy cake decorated by Em! I still can’t believe Dolce is 13. Joshua bought him for me when I was 16 and that dog has been through it all with me. Except that one time we left him in Alaska for 130 days while we were in Cincy. We love our little old, stank breath man!

We had to get LJ’s routine bloodwork done at the Liberty campus. As we were walking into the building, LJ was “tightrope” walking along the curb. I’m usually pretty strict about my kids walking on the curbs but this time I just enjoyed him being able to walk and on a curb at that. One thing I can be thankful for in this diagnosis is that it has slowed me down and allowed me to appreciate the simple and beautiful things. 

We came home to an amazing surprise package from the Jessie Rees Foundation! It was a family package with t-shirts for all of us and an awesome popcorn bowl for a movie night! I loved that Em got a super sibling shirt and she was so proud of it too!

We settled into the weekend ready to celebrate Easter! We started with resurrection eggs and dying eggs. This year was the most hands off we have ever been dying the eggs and it was so much fun! Our kids, even super extra Emmy, wanted to keep their designs simple and that helped with the enjoyment of the process too!

Easter morning Emmaleigh woke us up at exactly 7am and ran straight to their baskets! She was disappointed that the bunny didn’t leave eggs all over the house like he normally does until she looked outside! The bunny had left them all over the yard! I heard the bunny outsourced the egg drop in our yard and it was probably the best decision he had ever made!

We got Easter Sunday dressed per Em’s request, took pictures per Mama’s request, and made a sweet little Easter dinner per Daddy’s request! Church looked different this year and we watched online like most of our country. Quarantine Easter was one we will never forget but the reason for Easter will never change. God sent his son to die for us and save us. No one, no virus can ever take that truth away from us. 

We started shopping for a camper and one day Daddy took LJ with him to Cincy to look at one, so I got to have some alone time with my girl! We had so much fun playing in make-up. She did a really fun and not so blended look on me. It was a beautiful memory that I hope she never forgets! After that we played with her dolls and took them camping. She thinks it’s so funny when I pretend to be her doll’s Glam-ma. It was so nice to be able to have her all to myself and Emmaleigh have my full attention too! 

Joshua and Emmy were the ones to find our camper and they brought it home to a very excited LJ! We were so excited to start renovations. 

Next up was the dreaded MRI and this time it was a COVID-19 protocol filled mess. Great Wolf Lodge was closed, so our MRI tradition wasn’t happening this round. The hospital wasn’t allowing siblings to any appointment or procedure. So us not having anyone to watch Emmy at the time, we decided Joshua would stay home with her. The team called Thursday before the MRI to tell us LJ would have to be tested for Covid-19 to receive anesthesia. We were not willing to subject him to the test with him having zero symptoms, so we declined the test. Friday the anesthesia nurse called with her normal “he can’t eat past this time” talk and I asked about the test. She hadn’t heard of the policy change and told us to proceed as normal. All the policies at the hospital were changing rapidly it was hard for anyone to keep up with them. 

We tried to enjoy the weekend but I was dreading the possibility of fighting this test alone in an MRI waiting room with my little boy. I was there to see what the monster in his head was doing, not to argue with anyone. On Monday, another anesthesia nurse called with the update policy that LJ would have to be tested prior to his MRI. When we told her we declined the test, she said “well he won’t be scanned then.” I don’t think she understood what this would mean for our family. 

No scan = No Clinical trial. No clinical trail = No chemo. No chemo = ???

There was discussion about if he wasn’t tested, he would have to be accessed in his port without a parent present. Basically, a lot of threats that we weren’t willing to bow down to. While we understand that everyone needs to be protected from the virus, we didn’t feel comfortable subjecting LJ to a painful test when he was showing zero symptoms and had been quarantined for 30 days. After many phone calls back and forth, and our amazing research nurse knowing and loving our family well. It was decided that I would drive LJ down to Liberty campus Monday evening and have his port accessed so he was ready to go the next morning. We felt really strongly about him being accessed without us present. 

One battle down, one to go.

The next morning, Tuesday, LJ and I were supposed to be at the main campus at 6am. His MRI was at 630am. I needed to leave the house around 5am…I woke up at 530am. It was insane but long story short we made it to the hospital right at 630!

We were screened with a temperature check, given masks and stickers that we were screened for the day, and checked in and went to wait in the pre-MRI room.

We had a VERY interesting nurse that we had during radiation 2 years ago. She was lovely, just very thorough and talkative. The anesthesia nurse practitioner came in to tell me how everything would go (I can just about recite this speech by now) and double check that I was declining the Covid-19 testing. It was a very simple question and answer and that was it! I was so thankful it wasn’t more than that.

Once the team was ready, they came into the room to get LJ and he walked on back. Usually I am allowed to be right next to him as he is put to sleep but because of Covid-19 everything was different. If this had been my first or even fifth time putting LJ to sleep that would have been much more tramatic. But LJ knows what is going on and had no problem going back with the team to give “his snake a drink and take a nap.”

I walked out of radiology and headed outside. Carrie brought me coffee and I got to chat face to face with a friend for the first time in a LONG time. Then I headed to the cafeteria (the one place you didn’t have to wear a mask the entire time) and it hit me, LJ was in an MRI checking on his brain tumor. We had growth last time and it has to be stable or smaller this time. God had been SO good to protect me from those thoughts until that moment. I had been so wrapped up in the Covid testing drama that I hadn’t really thought about the actual MRI and results. I’m telling you; God takes such good care of me all the time. 

I ate breakfast and sat there breathing freely (I am super claustrophobic) until I thought it was almost time for his number to turn green on the scan board in the radiology waiting room. When it turned green I rushed to recovery to hug my boy!

He was almost awake with a packet of unopened saltine crackers sitting on his lap. The nurse didn’t know if they had gluten or not, I was super thankful she didn’t give them to him. I had a granola bar for him in my bag. The kid was hungry and was trying to eat it half asleep! We were waiting on transport to help me get my heavy little man back to the car. The nurse kept telling LJ we were waiting on a wheelchair. He saw one (another child’s) across the room and said “there is a wheelchair right there!” it was hilarious because he was just waking up from sedation and didn’t miss a beat! We were wheeled to my car where I loaded him up and we drove all the way home.

LJ was running around our house as soon as we got back home.

The next day was “wait day.” It was also Earth Day and Emmaleigh had a fun make up idea planned for me then we were going on a trash walk. I walked around our neighborhood with my side kick looking like Mother Earth…

The next day we headed to Cincy, all four of us, Carrie agreed to watching Em so that Joshua could be at clinic with me! We told LJ that Em was going on a field trip so that he wouldn’t be sad that he wasn’t hanging out with Carrie too! During his appointment we were told his tumor was STABLE! Such a joyous feeling!! We also signed paper work to continue on the clinical trial. LJ had finished 24 cycles of his clinical trial, 672 days straight of taking chemo. It’s unheard of and a miracle that we are so grateful for! 

Moving forward with cycle 25 would look the same as all the previous cycles, oral chemo daily, bi-weekly bloodwork, and an MRI every 12 weeks. The next MRI is July 14th. We don’t know how long LJ will continue this treatment but we know that for now it is working with very little side effects.

When we were leaving clinic, we ran into the Varns family while Addison was in her MRI. It’s always so nice to see them. Though there is always an underlying high amount of anxiety surrounding scan, we were all confident Addison’s would come back just like LJ’s, stable. We chatted for a bit then got in the car and headed to get Emmy from Carrie. While we were driving back, I was checking Facebook and Heidi (Addison’s mom) posted that urgent prayers were needed. They found additional tumors in Addison’s brain, at the base of her neck, and needed to do a full spine scan. The full spine scan was just as bad and there were new tumors there as well. It was just heart shattering and shocking because Addison had had ZERO new symptoms and was as happy and healthy as ever! 

This tumor is the most intense emotional roller-coaster ride you could ever imagine. 

We spent the weekend being really lazy. Recovering from scan anxiety and trying to process the news for the Varns family. 

On Monday we got to do something really special. Addison was to start another round of radiation quickly and her friends and family were sending her off with a parade! They only live 2 hours away from us so I loaded up the kids and we surprised their family by joining in the parade. The entire drive there the most amazing worship music was playing on The Message. God does such a good job at calming my heart when I need it the most. 

The parade was awesome and we stopped it for a bit as we jumped out the car to give hugs and cry on each other’s shoulders. The last time Heidi and I saw each other we were celebrating LJ’s stable and awaiting to hear the same for Addison and that just wasn’t the case. It was emotional and beautiful. The Varns are such strong family and they are taking on this new challenge with such courage. 

But do cancer families really have a choice? We have to step up and be brave when we feel like we are crumbling. We have to hold in our emotions while our little ones look up at us for comfort. We have to be strong during our weakest moments. It isn’t easy. Thankfully we don’t ever fight this fight alone. Families fighting similar battles help you continue on but all of our strength comes from God, and God alone. 

We will continue to pray for a cure but place our hope in God. 

One thought on “672 Days of Chemo.

  1. So thankful your family had some special time together during quarantine. I loved hearing the stories and seeing the pictures. My heart and eyes overflow when I see LJ. walking along the curb, riding in his car,and playing along with Emmaleigh!!! 8 rejoice with you in the news of stable scans and grieve with Addison’s family as they received news of tumor growth. Lifting them in prayer as I continue to pray for LJ. Prayers always for a cure.

    Like

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