We got settled in at home as quickly as we could! Joshua returned to work, I returned to housework, and the kids returned to tearing up the house! It felt so nice to be home, in our own space, and establishing a new routine.
LJ’s clinical trial involved taking two chemotherapy medications daily. Everolimus which he would take for 28 days per cycle and Ribociclib which he took 21 days per cycle. I had to take the Everolimus pill put it into a syringe and add 5ml of water then let that sit for 3 mins. We would give him the two Ribociclib capsules while we waited on the other to dissolve. He did so well taking the capsules. After 3 minutes, we would squirt the syringe into the sink so there was only 2ml left of the medicine solution. We would squirt this into his mouth while quickly giving him Sprite to wash it down. Older kids described this medicine as bitter and gritty tasting. It couldn’t have tasted good, but LJ took it like a champ!
Before he was diagnosed, while living in South Florida, I would count to five while the kids drank out of their water bottles with straws to make sure they were drinking enough water. We would have “water breaks” and i’d make them drink while counting 5, 4, 3, 2, 1! After he was diagnosed we learned that the ability to take capsules could determine whether or not you would be eligible for some clinical trials. We began teaching him to swallow pills. We would put a supplement in capsule form in his mouth and make him drink while we counted! And it worked! Our 2 year old could swallow pills! Em’s learned early too, here is a video of her being an adorable 5 year old learning to swallow pills!
In addition to the daily medicines, LJ would have blood work done every other week. We ventured back to Providence Hospital, in Anchorage where he was diagnosed to get his first blood draw in their Chemo infusion bay. To watch your son RUN down a hall that he once used a walker to walk down is pretty miraculous.
Adding this medication and appointments to our routine didn’t stop us from enjoying the bits of summer we had left in Alaska! We went camping with some friends and had the best time soaking up the beautiful place that is Seward, Alaska! The kids played in a boat at the front of our campsite, we walked down many trails, hiked up to Exit Glacier, and visited the Alaska Sealife Center!
Watching LJ run would never get old! It might give this Mama heart anxiety but brought so happiness and gratefulness too. Always a rollercoaster!
Our next adventure would be Papaw and Mimi’s visit! We went to the Alaska Wildlife refuge, ate car picnics, and the highlight was seeing a humpback whale! We had so much fun on that trip! LJ also took a great nap!
It was already time for LJ to return to Cincinnati Children’s, he had to go back every 28 days to get a refill of the clinical trial medications. This trip would be our first solo trip, Joshua had just returned to work and didn’t want to ask for more time off. This trip would also be another MRI.
During this trip I got to see my friends Jealine and Adam, Erin, and Heidi, and of course ALL their amazing kiddos! all people i had met in Homestead, Florida, all people God had allowed to be close to us during this trial. We went to lunch with Jealine’s family! Hung out at Erin’s parent’s house and met her wonderful family (i had already met her parents, they were our suitcase saviors!) And Heidi and I had the bright idea to take 5 kids to IKEA! What a fun time that was!
The actual MRI (number 4) went really smoothly and I was a professional at allowing my little be boy to be sedated. 30 rounds of radiation will do that to a Mama.
But the day of the scan results…what a train wreck. I woke up early in our hotel room and frantically checked his mychart account hoping they had already released the scan results and they had…
LJ’s tumor had grown.
Not by much, but definitely was bigger. I got upset, like entire body shaking hyperventilating upset. I heard from God (for the first time in my life that I could remember so clearly) that this journey would have highs and lows and he was right there with us through them all. I instantly felt a peace overcome my whole body.
The LORD gives strength to his people; the LORD blesses his people with peace.Psalm 29:11
I woke my boy up and we went to the hospital. His heart was good, blood pressure’s good, weight’s good and we go into the room, first Dr. (Not one we normally see) comes in and is smiling and happy with the results. I was confused but encouraged, then his radiation oncologist came in and was so excited to see LJ and how well he was doing and assured me that this MRI showed some good things with very little growth, growth but very little and he wasn’t the slightest bit concerned. We love Dr. Vatner and trust his opinion so I felt instantly strengthened. God brought this man in our room that day just for me, to calm me down and give me a physical person I trust. There was no reason for him to “stop by” but he did.
LJ would start the third cycle of the clinical trial and everything was going just as planned!
These results were not exactly easy to hear with my husband thousands of miles away but he was incredibly calm when I called to tell him the chart had updated and the tumor was bigger. even more encouraging and reassuring when I called him after the clinic appointment and told him everything was fine!
Next we went to ophthalmology and one of the techs went to get someone else to redo some measurements and I’m just like geez here we go again. something was wrong with his eyes. The Dr came in, looked at his eyes and said “if I didn’t read his chart I wouldn’t know anything was wrong with this boy.” All the worry and anxiousness that overcame me when the tech redid measurements was very human of me, but also very unnecessary. It is hard to let go of worry when you are handed these life circumstances but this journey is teaching me to let go and let God.
We flew back home to Joshua and Emmaleigh and all was right in the world!
We visited Eklutna Lake, Thunderbird Falls, and Virgin Creek Falls! We picnicked while watching at Turningain Arm for beluga whales. We really were living the Alaskan dream while we could!
We ended August 2018 with back to school pictures. A super joyful moment that hand a newfound gutwrentching sting. Never in my life did I think I would cry taking my kids pictures. Not because I was sad they were getting older but because I was unsure if this would be the last time I would take LJ’s back to school picture and he was only entering preschool. It wasn’t fair that there were so many posts on social media of other cancer families and their empty porches as they prepared to endure another school year without their child. We should all really celebrate life. Your child getting older could be bittersweet, but it really is mostly sweet. At the time I would give anything for LJ to see a beginning of Kindergarten picture. For now I would have to enjoy this 3k picture and pray for a miracle.